"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

September 30, 2012

September Instagram

Over the hump! Yay!

She showed major improvement over the past couple days!

On day 4 at Primarys, they were able to wein her down to 10L @ 55%....she still was on the continuous albuterol and they just kept her sedated and sleeping.  They don't want her to pull out her NJ tube, especially since her IV went bad and if she pulled it out, they'd have to try and find another vein so they could give her fluids.  She was out of it pretty much all day long.

I took advantage of her sleeping so much and ran home and picked up my kids from school.  I had scheduled a sibling class for them at the hospital and I thought I'd take them out to lunch before we headed up to it.  My kids are so great.  They are all patient and loving and they understand that baby needs me.  They pray every day, every prayer for her and everytime I walk into the house after I've been gone they ALWAYS run to me screaming "mommy, mommy" and they jump all over me giving me hugs and kisses.  All 3 of them do that and I absolutely LOVE it!  I have such great kids!  :)

The sibling class was awesome, and I'm so glad I took them.  The social worker took us into a room and explained everything medical that is happening to their sister.  She had little dolls there and she showed them how to do an IV, and what it's for.  How the oxygen works, what the monitors measure and what it means when they beep.  She let them ask any questions they wanted and she answered them so that they could understand.  It was very helpful and I think they really enjoyed it.

After the class was done, she gave each of them one of the dolls and some markers and told them they could draw faces on the dolls.  This was Makai's.......LOL.....as soon as I saw it I started laughing.  Can you say UTAH fan??!!  LOL

We went in and visited with baby Katea for a little bit after the class, but she was sleeping and my kids got bored.  I had to think of a plan B so they wouldn't start touching things they weren't supposed to, so I took them to the 3rd floor to the awesome playroom they have up there to let them play.  They were there for quite a while just playing and drawing and making different crafts.  I left them there with the volunteer staff for a minute while I went to check on baby Katea and when I got to her room, Gramma Kesa and Grampa Kina were there with her.....baby Katea was awake and being held by Gramma.  There were no smiles from her though LOL.
In that picture above, they were trying a different high flow canula....I think they said it was an adult one....they thought it might stay in her nose better....that only lasted like 30 minutes and they went right back to the one she had been using.

By that night they had her down to 6 1/2L @ 40%.  She had finally gotten over the hump and was on her way to getting better!  Yay!  I had high hopes of her getting to move to the infant floor, but unfortunatly it's not going to happen today.  Her oxygen levels are ok, but she's got to be able to eat and keep her food down.  She hasn't had food in her stomach for so long that the little amounts they've tried to feed her, she's thrown right back up.  She'll get it though, I bet we'll get to move to the floor tomorrow!  :)

Good job baby girl....you're taking steps in the right direction....my little fighter, I love you!

September 27, 2012

Just get over that hump....please!

4 days at Riverton hospital and 2 days so far at Primary's.....no real improvement.  Last night in the middle of the night, she woke up when they came in to give her albuterol and was super irritated.  The sedation must have worn off and she was so mad.  She was screaming, I could see it in her eyes, but no sounds were coming out I couldn't hear a sound because of that big mask that was covering her face.  She was starving because they hadn't fed her in almost 72 hours....and one of the only things she finds comfort in is this little blanket toy that has little ribbons that stick out the sides of it.  She likes to like on the little ribbons and it calms her down.  Well, she had her little blanket in her hands, but because of the mask covering her mouth, she wasn't able to lick the ribbons and she was getting super frustrated.  She would keep bringing it up to her mouth, her hand would hit the mask and she would scream and cry harder.   :(  They have to take the mask off to give her the albuterol treatments, and when they went to put it back on her after her treatment, she fought hard.  She was screaming and pushing them away with her hands and feet, and she was moving her head back and forth so they couldn't get it on her.  They were all surprised at how strong she was.....because even with 2 of them in there, they still couldn't get it back on.

The resident came in and said that because of how irritated she was, and because she obviously wasn't tolerating it, that they would just try to put her back on high flow and give her a break from the CPAP for a while.  She went back to high flow on 12L @ 80%.....that just sounded so much worse to me.  From 6L to 12L.  They up'd her sedation medication in hopes of helping her calm back down and rest, and because they still weren't going to feed her.  Because her mouth wasn't covered anymore, she was able to lick the ribbons on her little blanket and that with the increased sedation helped her to go back to sleep.  Poor baby.

While she was sleeping I asked the nurse why they weren't feeding her.  She hadn't eaten for 3 days and I know that part of her reason for being so irritated and miserable was because she was starving.  She went and talked to the doctor and he came in and told me that the reason she is not able to eat yet is because she hasn't improved her respiratory status at all since we got there.  There was a real possibility that she would need to be intubated and if that were to happen, she can't have any food in her stomach.  He explained to me that usually by now, the virus would have already hit it's peak and would she would be getting better by now, but because of her CLD and her weak lungs, she just hasn't made it over the hump yet.  He assurred me that she would and that as soon as she did, she'd get better quickly, it's just waiting until she gets over the hump.  He told me that they might be able to put an NJ tube in, which means that they would pump food directly into her intestine...passing her stomach.  She had to have an NJ tube when she was in the NICU, so I already knew what that was.  I told him yes, that I would love that if we could feed her.  She won't get the sensation that she's full because it won't be in her stomach, but at least her little body will get the nutrients that it needs.

They came in and put the NJ tube in her and then did an x-ray to check placement.  The tube was wound up a few times in her little stomach, but the end was down into the intestines....so they got it on the first try, yay!  Baby did not like it, but then again...who would like someone shoving a tube through your nose straight down to your intestine?   I was so glad she was finally getting some food though! 

Baby girl with her NJ tube, back on high flow, licking the ribbon of her blanket :)

In the afternoon when she was sleeping, she started to de-sat again.  She hung around the low 80's for a while so they ended up turning her high flow up to 15L @ 60%.  They were trying a different high flow machine than the one she was on when she first got to Primarys....this one had the ability to go up to 20L....but the nurse told me that if she still de-satted on the 15L, they would either move her back to CPAP again, or they would intubate her so that she could get some rest.

Right after the nurse told me that, the doctor came in to talk to me.  He told me that she is showing signs of chronic asthma, which they can't technically diagnose in children under 2 years old, so they called it retractive airway.  What they are seeing is that she keept having "asthma attacks" and periods where she coughs so hard that she stops taking breaths, so she's not keeping her sats up.  He told me they were doing everything they can not to have to intubate her, but she's just not showing any signs of improvement yet.  In the asthma attacks, her air sacks are collapsing and she's not strong enough to re-open them on her own....and it was taking a lot for them to help her re-open them. :(  On top of that, she has a lot of junk/fluid in her lungs...so they started her on Lasix to help her get rid of some of the excess fluid.  He told me that in chronic asthma patients when they have these same kinds of attacks, they do a continuous albuterol drip that helps keep the broncials dialated and open.  They wanted to try it on her.  They've been giving her albuterol every 2 hours and it seems to be helping her so much....but it seems to wear off quickly.  So she does good right when she gets it, then it wears off and she de-sats and so they give her another treatement and she sounds better, but it takes her a long time to recover her sats.  It's a vicious cycle.

I left for the shift change because the ICU is closed from 7-8pm and when I came back, she was down to 12L @ 60% which was awesome.  The albuterol must have been working for them to be able to turn her down 3L in that hour.  She was satting good, she was getting fed through the NJ tube, she was sedated, calm and sleeping.  I was happy that she was finally getting some good rest.  Hopefully that would allow her little body to repair itself and she could get over the hump and start getting better!

September 26, 2012

Happy Birthday my little Miracle!

Baby slept really good for a couple hours, but when the nurse came in to do her vitals, she startled her and baby started coughing.  She coughed and coughed and coughed for like 10 minutes straight.  Her sats obviously dropped way down so they turned her up to 8L @ 100%, but that didn't make a difference.  Her sats kept dropping and dropping and it went as low as 53, so they had to bag her to bring her back up.  :'(  It took her a really long time to recover from that and they had her on the very highest setting for high flow and she was still only satting 84-87%....so they had to move her to the CPAP.  She just couldn't do it, she needed the pressure to help her keep her lungs open.  That broke my heart.  That was the first time since the NICU that she has needed that much help.  And even though we had already been in the hospital for 5 days, she was not showing any signs of improvement at all.

Baby girl back on CPAP

On the CPAP, they were able to turn her back down to 6L and a 45% fio2.  She's starving because they won't let her eat.....she does have the IV fluids running in her, but that's not satisfying her.....she's so grabby and feisty and mad at the big mask that has taken over her face.  She wouldn't calm down so they're keeping her sedated.  She's completely out of it.

Today is September 26th.....her actual birthday!
As I look back on this past year, I can't help but thank my Heavenly Father for her.  She has been through so much for such a little person, but she's so amazing!  Her personality, her fight, her strength, her cute little face, her big brown eyes, everything about her is a blessing to me.  I have been through a lot right along with her, but she makes be a better and stronger person.  She's definitely my little hero!  This is not the way I wanted to celebrater her birthday, but I am so glad that she's such a fighter!

The social worker in the PICU found out that it was her birthday and she made her this cute birthday sign and gave her this stuffed goat from Hunchback of Notre Dame.   

Aunty Tina came and visited and spent most of the day with me while baby was sedated and sleeping.  And then that afternoon, Grampa Kina came and brought me lunch and spent some time with us.  She woke up a little when he was there and it was so cute....he stood over the side of his bed and she reached for him so he picked her up....tubes, equipement and all!

She stayed on the CPAP all day, and they kept her pretty sedated.  I was lucky enough to be in one of the two PICU rooms that had a couch bed instead of just a chair.  I stayed by her side the whole time.  I hated that she had to be sedated, but they could not bring a hospital bed into that room, so it was a good thing she was out of it so that she could get some rest.  She didn't really make any progress for good or bad that day, she just remained about the same. 

My mom came up and spent the afternoon with me and then Tea brought the rest of my kids up that night to visit.  They came with birthday hats and all.  Tala girl brought her a stuffed unicorn for her birthday and she totally made me laugh. 
Me:  Tala, what's his name?
Tala:  Cake
Me:  His name is cake?
Tala:  Yes mom, look at the candle (pointing to his horn)
Thanks Tala girl, I needed that laugh today....you little smarty pants!  :)

The kids got to come into her room to sing Happy Birthday to her....she woke up a little bit to hear them sing to her!

One year ago today was the scariest day of my life, but it was also one of my most blessed!  This little miracle was given to me and I've never been the same since.  She's amazing, I say it all the time....and it's true!  Thank you so much for all your prayers, thoughts, comments, and all your love and support!  She's in the ICU right now on a breathing machine.......and I've been crying all day long, but not for her.  I found out today that her little NICU buddy became and angel today.  :'(  No matter how hard your think your situation is, someone else's is worse.  Hold your loved ones tight and be grateful for what and who you've been blessed with.  My heart aches for little Luke's family.  It's your birthday today my little miracle and it's a happy one because you're still here with me!  I love you baby Katea!

September 25, 2012

The transfer...

So 4 days at Riverton hospital showed no improvement in her breathing AT ALL.  In fact, she was getting worse and worse.  She had a hacking cough and at random times she would grunt and flare her nostrils....she was whiny and lathargic and just plain miserable.  She's older now, and she's really grabby, so she pulled her IV out.  That was not fun.  The nurse came in and told me that if she didn't eat and pee than they would have to come and poke her again to give her some fluids.  I wasn't worried about that because she never lost her appetite throughout any of it.  She was miserable, but she was still eating and peeing and pooping like she should be. 

She slept a lot, like a lot a LOT!  I think she was just too miserable to be awake so everytime she'd wake up, she'd drink a bottle and go right back to sleep.  Her oxygen needs got so much worse and they turned her up quite a bit throughout the 4 days we were there.  In the ER they turned her up to 2 liters....on the floor, they went to 3 liters, then 4 liters.....and she was still satting in the high 80's, low 90's.  They were turning her up and up, loading her with steroids and giving her albuterol treatments often and she just wasn't improving.  :'(  I was so worried for her little lungs...and her little nose because she was requiring so much oxygen..... I just remember how in the NICU if they needed a higher amount of oxygen, like over 1 liter, that they move you to high flow so your nose doesn't get dried out.  Can you imagine having 4 liters of oxygen blowing in your nose every minute?  How miserable!  They brought a little water thing and hooked it up to her oxygen which they told me would humidify the air so it doesn't dry her nose out.  Poor baby.

I was super worried about her. When she was sleeping, she was still grunting and retracting really bad.  I pretty much just held her for those 4 days...that's all I could do.  Then on the night of our 4th night there....the pediatricians switched shifts and the new pediatrician on duty came in to check on her.  I expressed my concerns with her, and she examined her.  She did not like what she saw.  She asked me how long she's been grunting like that....I told her since we got there, 4 days ago...but it seems to be getting worse and more often now.  She asked me if she had been awake at all, responsive or playing....I told her nope, she's been sleeping a lot.  She went and turned her oxygen up to 5 liters....no difference in her sats.  She sat me down and explained that one of the main signs of distress in children is the grunting.  The sound alone is bad, but when they are flaring their nostrils it's a major sign that they need more help than we were giving them.  I immediatly cried thinking that the past 4 days my poor baby hasn't been getting enough support.  I can't even imagine having that feeling of not being able to breathe....and to be a baby....and for days.....so sad.  I wish I could breathe for her, or take her pain away.  The pediatrician said that when she listened to her she was pretty sure the left side of her lungs had collapsed.  She told me that they can't handle children/infants who require more than just the basic oxygen need, that they were going to have to life flight her to Primary's where they can give her the support that she needs.  :'( :'( :'(

In preparation for the transport, they needed to put an IV in.  Two different IV teams came in and tried.  They would get the needle in the vein and then when they would go to flush it, the vein would blow and the saline would bubble up under her skin.  She would scream out in pain.  After about 6 tries, I lost it and told them to stop and give her a break for a minute.  I know they didn't mean to, but she was in pain...she didn't feel good, she was screaming....and I was crying too.  They had already tried 2 veins in each hand, 2 veins in her left food and 1 vein in her right foot and they all had been blown out with no successful IV.  They decided to wait for the life flight team to come and see if they could get one in.

When life flight got there, they had a hard time as well.  Preemies have strange veins and they're much harder than anyone else's veins because they have so much poking from IV's and blood transfusions and things when they're first born that the veins tend to branch out and instead of one strong good vein, they have lots of little ones that can't take the pressure...so they blow.  The life flight finally got a good vein on their 4th try....so 10 tries total.  My poor baby's hands and feet were black and blue bruised from all the blown out veins and she was knocked out....just pure exhausted.

In preparation to send her, they turned her oxygen as high as they could.....she was on 3 liters of oxygen through the nasal canula and then they had a bagged mask with 15 liters flowing.  That's 18 liters.  :'(

Because they finally got the IV in, and she was calm and stable.  They decided she didn't need to go by helicopter.  They had to have the life flight team transport her, but she was taken by ambulance from Riverton to Primary's.
I got to ride in the ambulance with her.  That was really neat actually.  I work at AMRG and what I do is I dispatch for life flight and we do inter-facility transfers.  From one hospital to another that gives a higher level of care....exactly what was happening to us.  I chatted with the ambulance driver the whole way there about what their response times are, and I found out that he actually just picked up one of my crews a few days earlier who was bringing a patient to the University hospital.  It was neat to actually see what goes on on the other end of the phone call....but it sucked that that's the way I had to experience it.

When we got to Primary's, they took us straight to the PICU.  They were waiting for us, so as soon as we got there, they all came in and did their assessment.  The chest x-ray they took when we first got at Primary's was way way WAY worse than the original x-ray that was taken at Riverton.  The x-ray should show the area in your lungs are black...that means they're clear.  Baby's x-ray showed almost no black at all....it was completely white, that was NOT good.  They immediately took the mask off of her and put her on high flow at 6L @ 70%.  Finally she was able to calm down from all the commotion and get some sleep.