"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

February 27, 2012

Ova's gift

As soon as we found out that Sau was getting married, Ova started to plan something for his little brother.  He had an idea in his mind for months, but it didn't actually all come together until about a week ago.  Ova is very musically talented, I mean...it's amazing how much talent he has with music.  He has the ability to pick up any instrument, listen to a song, and be able to play it like he's been practicing forever......that's what he did with the piano, the guitar, the ukulele, the trumphet....so many instruments he can play now just from listening.  He doesn't know how to read music, he doesn't know which notes on a piece of paper go with which keys on an instrument, but he plays like he does.  His idea was to get a bunch of his cousins and friends together and play an old school Tongan song....and have his little sister Siosiana do a tauolunga to it.  At Tongan weddings, there are always people who do tauolunga's (Tongan dances) to show their love and respect and congrats for the new couple.  Siosiana would have danced anyway, but Ova wanted to make it even more special by having her dance to a live band.  His live band!

My little sister Leka is the most talented tauolunga dancer I know.  She can listen to some music, any polynesian music and make up some dance moves that go along with the words.  Ova called her and asked her to help him with his little surprise.....he wanted her to come up with a new dance for the song they were singing, and to come and teach it to Siosiana.  Leka spent a few days with us teaching Siosi the dance she came up with.

I went to the store with Ova and we bought him a banjo a week before the wedding.  He practiced maybe twice with all his friends, and at Sau's wedding reception, they preformed. IT.WAS.AMAZING!  Ova was so excited about it....like really really excited.....it turned out so nice.  Everything came together exactly how he planned, it couldn't have turned out more perfect!  They were loud, Siosiana danced beautifully...the crowd was cheering and singing along.  Such a great idea!  Such a great gift for his little brother!


Sau

Sau is my husband's little brother.  When Ova and I got married, he was only like 15 years old, so I pretty much got to watch him grow up....I consider him my little brother too, not just Ova's.  I love Sau because he doesn't treat me like an in-law, he treats me like his sister.  He comes to me when he needs advice, or just to talk....and he comes to me when he needs help.  I love that he is comfortable with me and that he trusts my thoughts and opinions.  Sau recently got married this weekend, and I don't think I've ever been more proud of someone in my whole life.  You'd have to know Sau and his past to understand how much this past weekend meant. 

Sau is a good kid and he has a very kind heart.  A few years ago, he was going through a little rebelious stage.  He was far away from the church, partying, making bad decisions and not really caring.  He made some really really bad decisions, such bad ones that they landed him in prison.  He served 3 years behind bars.  It was really hard to see him in that place, hard to go there and have to talk to him through a glass window, not being able to hug him and him not being able to kiss or hold his nephews and neices.....it was hard because it just wasn't him.  He was young and dumb and made terrible decisions, but he just didn't belong there.  Every time we would visit him, my heart would break.  
When he got out, we all told him that he needed to be careful, he needed to change his life and the things he was doing, he needed to find better friends who would be a better influence on him....he needed to be smart and stay out of prison. 

He is the perfect example of the scripture in Proverbs 22:6  "Train up a child in the way he should go: and when he is old, he will not depart from it."  His parents taught him since he was young right from wrong, but they allowed him the agency to make his own decisions.  His life could have turned out so differently than it has....he could have continued to party and make bad choices, and sadly if he did....it wouldn't have been much of a shocker to anyone, because he was in prison.  How many people that served prison time come out and make a complete lifestyle change for the better?  Not many.  He is a real life realization of that scripture....even with his past....he did not part from those teachings.

He can't take all the credit though...a lot has to do with Suliana, his wife now.  Ever since she came into the picture, he's made leaps and bounds of progress.  She didn't make him change or force him to do anything he didn't want, she just made him want to be a better person.  She is perfect for him and just being able to watch the transformation over the last year, and seeing the big steps he has taken and how much he has changed for the better, I know they were meant for each other.  Suliana is such a sweet, humble, quiet girl and we love her!  Sau is a very lucky man, but Suliana is just as lucky!  Sau worked hard, made the changes he needed to, repented and was able to get his endowments last month.  A few weeks after that, Suliana got her endowments.  Yesterday, they were sealed for time and eternity in the Salt Lake Temple. 

The sealing was so special....every sealing is, but his was different.  The spirit was so strong in there.  Sau and Suliana looked so happy.  He looked so clean.  He was glowing with the spirit.  I couldn't help but cry just looking at him.  Ova couldn't help but cry.  A lot of people in that sealing room were crying....so so happy at what was happening.  He defyed all odds and made it.  I am so so proud of him!

After the sealing, we headed to the reception.....if you've ever been to a Tongan wedding before, you'd know they are huge!  Sau's was no different.  The building they had it in was huge and it was completely full with people.  It was decorated so beautifully.  The food was delicious.  The program and dances were great.  It was a great day!  So proud of Sau.....so happy to have a new sister....so happy for the new couple!  I wish them a life full of love and happiness, they deserve it!

Suliana with her bridesmaids

Groom Sau with his groomsmen
Po-Takai-Kauasi-Hameti-Tevita Mafi

Bride Suliana with her flower girls
Toakesa-Alisi-Pisila-Lola-Lautala

Fangupo nephews in the line
Moses-Makai-Timote-Samiu

Tala the flower girl

All the handsome Fangupo men from youngest to oldest (with dad in the middle)
Po-Sau-TiTonga-Dad-Tim-Ova-Kina Leka

It was such great weekend.  Full of family.  Celebrating.  Food.  Dancing.  Fun!  I think my most favorite part of this whole weekend (besides seeing them in the temple) was that he ended his reception with his testimony.  At the end of every reception, the couple gets a few minutes to talk....to say whatever they want, and to thank everyone.  Suliana went first, then it was Sau's turn.  He talked and thanked everyone for coming, for cooking, for decorating...for all the love...and he ended with his testimony.  He counseled his friends that are still making the wrong decisions to repent and choose the right.  He told them he'd never felt as happy in his life as he felt that day.  He cried.  He's a changed man.  So so proud of him!

February 26, 2012

So Busy!

This has been such a busy busy weekend.  Not only is my baby girl in the hospital, but my husband's little brother got married this weekend too.  Needless to say, I've got a lot of blog posts coming in the next couple days.....to get caught up with everything that's happened this weekend!

Baby almost got to come home on Friday.  The Dr came in and told me that since she really hasn't changed in the week she had been here....he would be ok sending us home with her needing higher oxygen amounts, albuterol treatments with the nebulizer, and suctioning everything 2-3 hours.  I was overwhelmed when he said that, both from excitement that we might get to go home...and of fear, because we'd been in the hospital for a whole week, and she hadn't improved at all.....she was still super congested, needing to be deep suctioned often, her oxygen levels were almost triple what she needed at home, and now because of her ear infection and the amoxacillan.....she had a completely raw and bleeding bum because apparantly she's allergic to the antibiotic and it has caused her to have diarreha.  She has always been a constipated baby....and in fact, in the NICU and at home I was having to give her 1ml of prune juice in her milk every 48 hours just to help her keep things moving.  Since starting the antibiotic for the ear infection, she's pooped diarrhea every single diaper....and that equals one raw bum!  :(

We're still here in the hopsital, so we didn't end up getting to go home on Friday.  After the Dr came in and told me we might go that day....he said we'd watch her throughout the day and if nothing changed for the worse, we'd leave that night.  Well, at about 4pm on Friday after she had been changed, fed and burped.  I put her in her swing.  She loves the swing and can sit in that thing for hours!  It was rocking her and playing music and all the sudden, out of nowhere, her monitor starts beeping.  I looked at it and it said her heart rate was 96 and her oxygen saturations were in the 40's......sometimes the monitors don't read very well, so I looked at her to make sure she was ok.  She was blue.  It was reading correctly.  Immediately I grabbed her from the swing and started to stimulate her.  The poor nurse that was here that day was new, and she just stood by me as I stimulated her back to life.  She was scared.  I was used to it.  As I was stimulating her, she threw up everywhere.  I'm sure her needing to get that out attributed to her bradicardic episode....but that just bought us more time in the hospital.

We were blessed with some more visitors this past weekend.  I was laughing telling Ova that I should blog that I'm lonely more often because right after, we had tons of visitors and were totally feeling the love.  LOL. 

Stacey, one of our primary nurses from IMC came and visited us.  She is so sweet...it was her day off work and she drove all the way up here to hang out with us at the hospital.  She held baby for a while and we just sat here talking for a couple hours.  What I love is that we didn't only talk about Katea....we talked about the cruise she just went on, what was going on with me....just other regular day, random things.  It's funny because the nurse that was taking care of baby that day asked me, after Stacey left, who she was.  I told her and she was so surprised and shocked that a nurse from another hospital would come visit their old patient.  She said "I would have never guessed she was your nurse, I just thought you were long time friends the way you were talking with each other"  I just smiled.  Love that I met her as a nurse who took amazing care of my baby girl, and now because of it we're friends.  She LOVES Katea, a lot.  I am blessed because of it!  She brought the cutest get well card for baby Katea, and a little stuffed turtle, a mama with a baby.  The card says:  Get Well Soon!  I hope you're feeling better soon...and getting stronger, too, cause when I hear you're well again.....then I'll feel better too!   I am so grateful for all my primary nurses, and the friendship I have with all of them!

My little sister Leka was helping Ova with a little something he was putting together for his brother's wedding, and he needed her to come up on Thursday.  The only problem is that she lives with my parents in Spanish Fork....which is far from here....my mom was super sick, and my dad was at work with my brother....so nobody could bring her.  Ova was busy and didn't have time to go and get her, and neither did Tea.  I called around to see if one of my sister's was available to come stay with baby for a couple hours so I could run and get her, my little sister said she'd probably be able to come around 530 or 6.  I decided that I would just run there really quick....pick her up....drop her off, and come back to the hopsital.  Even though I was uneasy about it, I was going to leave her here by herself until my sister could get here....just the nurses taking care of her.  I really hated the thought of that, but I really had no other choice.  The stupid thing was that I didn't take into consideration what time it was.  I left the hospital at around 5pm.....hit rush hour traffic and what was supposed to only take me like an hour and a half to go and come back, was turning it to much much longer.  I was freaking out.  While I was driving, I found out that my sister wasn't there, and she couldn't make it.  More panic came.  I kept calling Leka on my way down there that she better be all ready because as soon as I got there, we needed to leave.  I seriously was only there for like 10 minutes before we headed back here.  We hit traffic on the way back too.  I felt my heart beating so fast.  I still had to drop Leka off at my house to help Ova before I could head back to the hospital.  I was having a panic attack.  I looked at the clock and it was 7pm and we were still driving, baby had been alone for 2 hours and I hadn't even dropped Leka off yet.  I wanted to cry.  I started feeling really guilty that I left her there by herself....I should have just stayed with her and figured something else out.  I was beating myself up hoping and praying she wasn't laying in her bed crying her head off. 

At 712pm I got a text from one of my good friends Kassie.  She was here at the hospital.  She came to visit us.  I felt even worse, and panic'd even more in that moment because I felt bad that she had driven all the way up to the hospital to visit us, and I wasn't even there....and wasn't even close to being there.  I texted her back and told her I was so sorry, I wasn't at the hospital yet.  She said it was ok, that she'd wait for me.  I told her if she wanted, she could go up to baby's room.  I drove fast...I was trying to hurry so Kass didn't have to wait too long for me, but I was so glad and relieved that she was there with baby, and I knew she wasn't alone crying in her bed.  I dropped Leka off and didn't even go into my house, I pulled up....she got out, and I left.  I cried all the way to the hospital, sad that I left baby by herself....and feeling bad that my dear friend was there waiting for me.  I got to the hospital at about 830pm.  I walked in the room and saw Kassie standing over baby's bed talking to her.  She started crying.  I started crying.  She wasn't mad or irritated that she had to wait so long.  All my anxiety left.  She had just spent almost an hour and a half with her.  She fed her, held her, loved her.  I am so grateful that she was here, when I couldn't be.  Baby wasn't alone.  She is such a good friend!  Even though she had already been here for over an hour with baby, she stayed and kept me company for a couple hours.  I hold a very special place in my heart for Kassie.  She just had her beautiful twin boys.  When I found out I was pregnant, she told me she was going to send me the twin vibe.  As soon as I found out I was having twins, she was the very first person I called.  We were just laughing with each other that whatever vibe she sent me worked.  LOL.  She was one of the first people who I told when I lost baby Cindy....she's been there for me, showing support and love, and just being a really good friend throughout everything that's happend.  I love her!  She brought me this cute little 'Box of Sunshine'....with tons of yellow treats and goodies, gift card for gas to get back and forth to the hospital, and a gift card to Subway to get some lunch.  She's so sweet....I'm so grateful that she was here when she was and that she was able to stay with my baby girl.  Such a great friend!

I'll keep the updates on baby Katea coming, but for now....we're still here in the hospital and I have no idea how long we'll be here.  Just crossing my fingers and praying that she can get better soon so we can take her home!  Now the score is Hospital-143, Home-12

February 24, 2012

Aye, aye, aye.....HER EYES!!

When baby Katea left the NICU, her eyes weren't completely mature yet.  That hardly ever happens, espeically when they're going home on oxygen because high levels of oxygen can damage the blood vessels that attach to the retina and could cause blindness.  They went over with me before I went home, how important it was that I not let her high-sat, because the longer she high-sats, the more chance for damage.  I was comfortable with watching her saturations at home and making sure they stayed within the parameters that were safe....until her eyes could completely mature.

Being here at the hospital, I've been a nervous wreck about it.  She's been on extremely high levels of oxygen a lot, and it scares me.  In the ambulance ride from her pediatricians office to Primary's, they had her oxygen and 100%, and she was satting 100%....if she would dip lower than that even by 1%, they would turn it up more.  I was so nervous.  I explained to the EMT about her eyes and how she can't be on high levels of oxygen, and he wasn't too familiar with ROP, or the damages that could be caused by the oxygen, so he just kept it high because his main concern was to keep her saturations stable.  My heart was pounding the whole ambulance ride, nervous at the oxygen level....and that we had to go back to the hospital again.

When we got to the emergency room, I immediately explained to them the situation....they understood and changed the parameters of their monitor to beep if it went out of the range of 88-98%. 

When she was finally moved up to a room, I explained again....they changed the parameters of her monitor to beep, but with a different nurse every single day and them not used to having to deal with someone who can't have high levels of oxygen, she's definitely not monitored like she should be....and everytime she high sats, my heart drops.  She has to get albuterol treatments and when the nebulizer blows into her face, she's always at 100%.  Getting a treatment every 4 hourse meant she was on high levels of oxygen at least every 4 hours...and even some other times when she wasn't getting the treatment....that was WAY TOO MUCH!!  She was supposed to have her eye exam follow-up appointment on Tuesday, I didn't know what was going to happen since we were here in the hospital....but I thought that maybe, we could still keep the appointment since the eye-exam was supposed to be here anyway.  Not such luck :(  Their schedule was too full to come to her room to do the exam...so they rescheduled it for Thursday.  They said that if we were still here, they would come to her room...and if we were already discharged, to call and have them overbook him for that day to make sure she got seen.  I was so bummed that I had to wait another 2 days before getting her eyes checked, but what could I do??  Thursday came and I sat here waiting all day long.  Bright and early in the morning when I woke up, I asked them what time the optimologist would be here.  They said he didn't have a set time, that he would just come when he had a minute, but that he knew he was coming.  I waited patiently all day long.  At about 430pm, I asked them to please call and ask....there was only 30 minutes until their office closed and I was worried they weren't going to come.  Sure enough when the nurse called, they told her they didn't have time that day.  I lost it.  I totally cried and broke down like a crazy lady.  They told the nurse that they rescheduled it for Friday (which was today)  I think because of the big scene I made, they pushed it a little more than they had been, because bright at early at 7am, the optimologist was here in our room ready to do the exam.  Finally, I'd be able to not panic so much.  Praying and hoping he would just tell me that Yay!  Her eyes are mature...no need to worry about oxygen levels.....that's what I was hoping and praying....but that is NOT what happened.

The exam was super quick, and very invasive.  I never actually saw one done in the NICU because everyone advised against it.  I watched this one.  OMG, I can't even explain what they did to her poor little eyes.  It's crazy, and now I know why they advised me not to watch in when I was in the NICU.  The results were not what I wanted to hear.  Her ROP is back to stage 2, and now she's developed PLUS DISEASE.  He said that even though her ROP had gotten worse, he could see the blood vessels going through and almost reaching zone 3.  Not what I wanted to hear...because really, it's the same thing as when we left the NICU "almost zone 3"....except it's worse because now she's developed PLUS DISEASE.....uugghh, poor baby girl.

I did a google search on what plus disease is, because I really had no idea....and this is what I found:

Plus DiseaseAs ROP progresses, more and more shunting occurs in the neovascular tissue at the retinal vascular-avascular junction. This increased retinal vascular blood flow results in dilation and tortuosity of the major retinal arteries and veins in the posterior pole - a development described as "plus disease". For an eye to qualify as having plus disease, these vascular changes must be present in at least two of the four quadrants around the optic nerve.

So now, all my worries of the high oxygen levels were real.....her eyes are still bad, and we still have to watch her oxygen levels until her next eye exam which is in 2 more weeks.  :(

February 22, 2012

Feelin' the Love

Today was a better day!  :)  Baby wasn't as irritated, she seemed to be back to her normal self.  She cried when she wanted to be fed, and all other times was super calm.  She even laid in her crib on her back super content just looking around and kicking her feet for like an hour.  I thought that since it was only an ear infection, that we would be closer to going home....but the resident doctor came in and talked to me today.  He told me that because of her oxygen levels, we are kind of in a holding pattern.  She's not really getting better, but she's not getting worse either.  She's still requiring like .40 liters of oxygen per minute....which is WAY more than she needed at home, and they want her to be closer to her home parameters before she can leave.  There were times today that they were able to turn her down to .20 for a while, but right now it's back up to the .40 she's been hanging out at.  I just remember it took us so long to try and wein her oxygen in the NICU....I hope it's not that long over here!  As much as it sucks to be in the hospital....I'm really ok with it!  I mean, I'd 100% rather be at IMC with the nurses and people I love so much, but if she's going to be sick, I'd rather she be in a place that can help her when she needs it, than at home.  I was telling Ova....we're going to laugh later on down the road when she's the most healthy out of all our kids...lol.  This weekend Ova's brother is getting married and all his family is coming from out of town and staying at our house.  I think it's a tender mercy from God that she's in here....I know that sounds cruel and mean, but I'm serious.....that would be just way too many people around her, and much more risk of her getting sick.  Gotta focus on the positives right??!!







Today I had a lot of visitors and I was loving it!  First my good friend Michelle stopped by.  I actually haven't seen her in forever....she found out that my baby was in the hospital and since she was bringing her daughter here for an appointment she stopped in to see me.  It was so nice seeing her and catching up.
Then I got a text message from one of my NICU mom friends, Jenna, that she was coming up to visit me because she had something for me.  She's has a little miracle baby Jack that's still in the NICU right now.  Her little guy has almost the same beginning as my baby Katea.  He was born at 25 weeks, weighed only 1lb12oz at birth, but he is doing amazingly awesome right now and is almost 7lbs!  She is one of my really good friends from the NICU and everytime we'd see each other we'd always stop and ask how each other's kid was doing.  We'd celebrate with each other the good days and give each other encouragement on the bad ones.  She was my scrapbooking buddy!  :)  Her husband is so nice, he has that super sarcastic sense of humor....I think he'd get along great with my husband!  haha  They are such good people and I have no doubt that we crossed paths for some reason.  Jenna is one of the sweetest people I've met!  I was so happy when she stopped by today.  She brought me lunch and she also brought me this:
It's a scrapbook book that my IMC people made for me and baby Katea.  They passed it around and everyone wrote little get well notes to her.  See why I love them so much!  :)  I totally cried when I read it!

Then, as if that wasn't enough love for one day....I got even more IMC love!  :)  Christa, another NICU mom and a parent volunteer now text me to see what I wanted for lunch.  I told her not to worry about it because Jenna had already brought me food, but that if she wanted she could still come visit me.  Christa is such a sweet girl, funny thing that I only met her once on a Wednesday night at one of the parent support classes....but we've become really good friends....I've noticed that a lot with other NICU moms I've met....we all are instantly best friends because we can relate to each other.  Christa is always positive and upbeat and she always cheers me on when baby Katea has her bad days.  She's the one that started the IMC NICU parent page on facebook and is constantly doing things to try and be there for moms that are struggling with the NICU life.  She came up and visited me, and even though we only met that once....and didn't even talk that much the night we met, we sat here and talked for hours.  We were talking about our experiences, she was asking me questions about what I liked and appreciated that the parent support group did for me while I was there.  We talked as if we had been friends forever.  She's such a sweet girl!  She also brought me some goodies, and this cute little tile plaque that she made:
I absolutely love it and it actually has so much meaning.  This is the saying that is on the wall above the door as you enter the NICU.  I saw this every single day for 4 1/2 months.  Dr Seuss is right, a person's a person no matter how small!  :)

The night ended perfect with my little family.  Ova told me that they were laying on the bed and Lautala just started crying....he said she was crying so hard, that he couldn't console her.  He just let her cry for a little bit and when she finally calmed down, he asked her what was wrong.  She said "I want Mommy"....that broke my heart.  She is such a mama's girl and I haven't been around for her lately.  I asked Ova to bring the kids to the hospital and we'd eat dinner together in the cafeteria.  They came, we ate, and then we brought them up to see their baby sister for like 5 minutes.  This is the first family picture we've ever taken with all of us together!  I love it!

Lonely

They told me that the virus baby had would peak at day 5 and then get better, but today makes day 7 and yesterday and today have been horrible days for my poor baby girl.  Yesterday she just wasn't acting like herself, she was super out-of-it and irritated.  She had a lot of flem in her throat, you could hear it when she cried....and she was probably just irritated at that, and that the only way to get rid of it was for them to stick a tube down her nose all the way to her throat to suck it out....and they do that every hour or so.  I think I'd be miserable if they did that to me too!  She still had her appetite, but she wasn't eating nearly as much as she usually does.  I fed her a little bit, but after a few minutes, she started pushing the bottle out of her mouth with her tongue....she was so mad because she wanted to eat but she couldn't swallow or breathe because she was so congested.  The nurse came in and started to suction her....and that was HORRIBLE!  The food didn't have enough time to get down to her stomach so all she did was suction the milk back up.....baby threw up A LOT....I'd even say more than she just ate.  The sad thing was it not only came out of her mouth, but she was throwing up out of her nose.  So sad!  Her eyes were watering from the trauma of it and she was looking at me with a "mommy help me" look....just then she brady'd and pretty bad.  Her oxygen saturations dropped way down to the 40's and her heart rate was so low.  She was trying to protect herself.  It took turning her oxygen all the way up for her to get out of it.  I was really irritated because the nurse was non-chalant about it, so I asked her to move and I started to rub her back and try to stimulate her.  She finally came out of it and the nurse said "looks like you've dealt with this before"....I was so mad.  I MISS MY IMC NURSES!!  That whole experience totally exhausted her.  She wanted me to hold her all day long.  If I put her down in her bed, she's immediately start crying and getting all fussy.  I pretty much spent the whole day rocking her in the rocking chair.  Poor baby girl.

Today started out horrible!  I woke up to baby screaming bloody murder.  I ran to her crib to see her bright red from screaming so loud...she had kicked all her blankets off of her and she was sweating.  I picked her up and she was so hot.  I pushed the nurse call button to come in and check on her, and when we took her temp, she had a fever of 102.  That was so not good, especially since she hadn't had a fever at all since she got sick with this virus.  She was coughing a lot more frequently....not the deep cough that brought us in, but a tiny cough that came from her little throat, like her throat was irritated and sore.  She was definitely not acting like herself.  Even with all the stuff she's been going through she's such a calm baby.  She pretty much never cries unless she's hungry.  Today was different.  She was super duper fussy and irritated.  She didn't want to eat, she didn't want to be wrapped up, she didn't want to be held or to lay in her bed.  She was sweating.  She just didn't feel good.  Given her history, they were worried she had something else developing so they wanted to do a bunch of tests just to make sure, and they did everything!  They came in and took blood to get a cbc and to check some blood cultures....they took her down to get a chest-xray....and they had to get a urine sample.  The lady that did the urine sample used a small cath and she really hurt her.  She couldn't find her pee hole, and she started to get frustrated.  She started just shoving it in and out trying to force it to go in and baby was screaming out in pain.  I told her to stop because she was hurting her and she was so irritated with me.  She finally got it in, but only got a few drops of pee, with blood in it.  As soon as she pulled it out, baby peed all over the bed.  They didn't get enough so they ended up taping a plastic bag thing to her under her diaper to catch it when she peed the next time.  I wish they would have just done that in the first place...that was so much easier.  I don't know what she did when she was shoving the cath in and out trying to find her hole....but now every time baby pees, she screams because it hurts...and there's a little bit of blood with the pee.  Poor baby. 

Yesterday and today I've been so lonely here.  There are so many nurses and doctors and aid's that come in and out of the room, and we're even sharing a room with someone else, but I still feel alone.  Ova hasn't had time to come up here that much because of work and because his little brother is getting married this weekend and he's busy getting things ready for that.....but he wasn't able to come to the hospital all the time with me when we were at IMC either, but I was never lonely there.  The nurses were my friends.  The feeling in this place is so different.  I feel like I know alot of stuff about my daughter because I spent the last 4 1/2 months in the hospital with her, but I feel like everytime I make a suggestion or comment on something, they get irritated with me.  Maybe it's my fault.....the nurses at IMC were so wonderful, they set the bar so high...and maybe I'm not giving the nurses here a chance.  I don't know what it is, but I know that at IMC I felt like people cared about me, and I know they loved my baby girl.  Over here, we're just patients.  :(

I think I've been lonely too because I haven't seen my kids since the Friday when we got admitted.  I really miss them.  There's so many patients here and the nurses are so busy that I don't feel comfortable leaving her here by herself.  I left for like 20 minutes the other day to take a shower, just in the pod, and when I came back she was crying so hard....she was hysterical like she'd been crying for a long time, and our roommate said she pretty much cried since I walked out the door.....and nobody came in to check on her in that 20 minutes......so I've been sleeping here.  I hate to think she might be left alone crying.  Today my little sister Leka came up to visit her and she stayed with baby so I could go pick up my kids for a couple hours.  I took them to McDonald's and just spent some time with them.  I'm so glad they don't resent or get mad at me for spending so much time away from them.  They understand that baby Katea needs me, and I'm so happy they understand.  As soon as I pulled into the yard, they all came running out the door so excited to see me and they all gave me the biggest hug.  That totally made my day!  I love my kids so much!

When I got back to the hospital, Leka was holding her in the rocking chair and they were both sleeping.  It was so cute!  The results came back from all her tests, and thankfully they were all clear.  But she has a pretty severe ear infection in her left ear.  That's what was causing the fever that showed up this morning.  Tylenol and amoxacillin totally helped and after getting her dose, she was completely back to herself.  What a relief that it wasn't something more serious!

I'm overwhelmed with the outpouring of love and support from so many people!  I post on facebook an update on baby Katea, and immediatly I have 60+ comments from people cheering us on, sending us good vibes, showing they care and praying for us.  We are surrounded by so many wonderful supportive people, and I am so grateful.  I have no doubt that it's all the love and prayers from so many people, that despite the minor setbacks she may face, she is doing so well!  So thank you all very very much!  :)

Look at me, even though I'm sick and in the hospital, I'm still growing!  Today I hit 10lbs2oz!

February 20, 2012

Heavy Hearted

I've been throwing myself a pity party for the past couple days, questioning why my baby girl has to go through so much, why does she have to suffer, why does she have to be sick and back in the hospital again.  How selfish of me.  Today, my eyes were opened in more ways than one....and I'm forced to appreciate more what I have been blessed with, and it's a lot!

There is a IMC NICU parent support group on facebook that I was invited to recently.  It's been really neat to be able to meet and get to know other NICU moms....to hear their stories, their struggles, their heartaches.....and to get strength from their positive outlooks, overcoming their obstacles, and sharing their hope.  Many of them I've only met through facebook, never in person....but I still feel connected through our similar experiences.  Today I found out some devistating news from one of my mom friends that I met through that group.  Strangely enough, she's been on my mind all day long.....this is a mom that I've never met in person, only through the computer.....We emailed each other last week and she told me that her precious baby girl had a really rough week.  Today I thought a lot about her, she was kindof on my mind all day long.  In random conversations with my husband, her name would come up and I would wonder how her baby girl was doing.  I tried getting a hold of her through facebook, but no luck....then tonight I got an email from another NICU mom, her best friend, with the news that her baby girl grew her wings and went back to heaven today.  My heart dropped so fast and so hard and I cried uncontrollable alligator tears.  My heart hurts so bad for her.  Our stories are extremely similar, and in fact it almost has the same beginning....she had complications and due to bleeding her baby girl had to be taken emergency c-section at 24 weeks.  Her precious little angel lived for only 19 days.  I know there is nothing I could ever say or do to ease the pain that she's feeling right now, but I have been there.  Losing a child is one of the hardest things to go through.  I hope and pray that her little angel will run into my baby Cindy up in heaven and they can run around and play together.  Sitting here thinking of her, I can't help but to look at my baby Katea....she's sick and in the hospital, but she's alive.  No matter how much she's gone through, or how much she still has to go through, I will always count my blessings that through it all, she's still here with me, and I am blessed!

Today is Sunday and a young couple came to my room this morning to let me know that they hold a sacrament meeting at 1030am and that I was more than welcome to come if I wanted to.  They told me that if I couldn't make it, then they could bring the sacrament to baby's room for me.  I told them I would be there, but after they left...I seriously contemplated not going....no real reason why, just lazy and probably a little bit had to do with the pity party I was throwing for myself this morning.  After I had made up my mind that I wasn't going to go, another young couple came in to invite me.  I don't know if they meant to have two couples come tell me about it, or if it was a sign that I needed to go....but I took it as the second and I went.  The sacrament service was only 30 minutes from 1030-11am.  They held it in a little auditorum that had about 150-200 seats in it.  I felt a little akward going to a sacrament meeting in my sweats, but once I walked in, I was overwhelmed with the spirit.  What I was wearing didn't seem to matter anymore....everyone was in sweats or pajamas.  The whole entire auditorium was full to the top....with people even standing along the wall.  The prelude music was playing and I couldn't help but cry.  There were a lot of people crying....probably all the moms in there!  I just sat in my seat and watched as the auditorium filled up....I watched as parents rolled their sick kids in their wheelchairs, with all their IV's and equipment hooked up to them.  Other parents would bring their kids in wagons, the kids to fragile and frail to even sit up.  A lot of parents, like me, came alone because their kids were too sick to leave their hospital room, and there were even doctors and nurses who came in too.  It was an overwhelming sight to see.  They started with an opening song and a prayer and then then blessed and passed the sacrament.  Even though the room was full of kids, that moment was silent...so reverent.  The sacrament was passed to everyone and then they had a member of the Primary Children's Branch Presidency give a talk....he talked directly to the kids that were there.  In that moment I was humbled.  I looked around the room and saw so many sick kids.  So many kids that have been in the hospital for so long, way longer than we have....some who will never get to go home.  I saw families there with their kids, who knows how many Sunday's they've been coming to this branch at the hospital.  I felt a room full of unconditional love.  There was a little boy in a wheelchair sitting in the front row.  That whole row was saved for his family.  There were 4 other healthy kids, the parents and him.  They come to church here at the hospital every Sunday so they can be together as a family.  The little boy couldn't hold himself up....he kept on falling forward in his chair.  His mom was sitting patiently by him and she'd gently pick him up every time he'd fall.  She did it over and over and over again in that short 30 minutes.  He was being a little fussy and his mom didn't know what he wanted.  He put his had out and his mom held his hand....he immediatley calmed down.  Unconditional love.  In my own little world, I've been given too much.....my plate is too full, I can't handle it.  But comparing it to the greater scale of things, I am so blessed and grateful that with all the complications that could have happened and all the things that could have gone wrong....my baby girl is a fighter and she's going to be ok.  I needed these experiences today to keep me humble, grateful and strong.  I guess it's true that no matter how bad you have it, you can be sure that someone has it worse.  God doesn't give us what we can't handle....even if we don't think we can handle it!

What an emotionally draining, sad  and eye-opening day.  I think part of losing baby Cindy and having baby Katea be born too early was a lesson just for me.....to learn to appreciate more what I have, and to recognize, realize and relate to other people around me.  Another one of my NICU mom friends posted this poem on her facebook account earlier today, and I think it's perfect:

A Preemie Mom's Oath.

I have sat in the NICU and waited.
I have cried and prayed.
I have endured.
...

Like most things in life, the people who truly have appreciation are those who have struggled to attain their dreams.
I will notice everything about my child.
I will take time to watch my child sleep, explore and discover.
I will marvel at my surviving miracle every day for the rest of my life.

I will be happy when I wake in the middle of the night to the sound of my child, knowing that I can comfort, hold and feed him and that I am not waking to a nurse taking another temperature, an alarm going off, another round of meds or because I am crying tears for fear of the unknown.
I will be happy because my baby is alive and crying out for me.

I count myself lucky in this sense; that God has given me this insight, this special vision with which I will look upon my child that my friends will not see.

Whether I parent a preemie with physical challenges or medical issues, I will not be careless with my love.

I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.

I know disillusionment as I have been betrayed by my own body.
I have been tried by fire and hell many never face, yet given time, I stood tall.

I have prevailed.
I have succeeded.
I have won.

So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs.

I listen.

And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard. I have learned a compassion that only comes with walking in those shoes.

I have learned to appreciate life.

Yes I will be a wonderful mother.

February 18, 2012

12 Days

That's how much time I got to have my baby girl home.....only 12 days!  :(  I'm sitting here right now next to her white metal crib....she has a big bruise on her left hand from an unsuccessful IV poke, and her right hand is all taped up with a splint because the IV worked in that hand, but they need to keep it straight, so she doesn't bend it and the IV pop out.  Her oxygen needs are up to 1/2 liter every minute from the 1/8th she was on at home.  She's coughing and wheezing.  She's completely exhausted, lathargic and worn out from coughing and working so hard to breathe.  But you know what makes it worse?  We're not in our comfort zone at the IMC hospital.  We're at Primary Children's Medical Center.  I'm not knocking this place at all because they give excellent care, but I sure do miss the warm loving kindness and friendship from our old home at the NICU.

Baby Katea started coughing a couple days ago.  It wasn't anything major, and to be honest I couldn't tell if it was actual coughing or her reflux...because she coughs with her reflux.  Not until last night when she was coughing more often and more severe.  She was not congested at all.  She was not wheezing.  She did not have a fever.  She had a dry hacking cough and it looked like it came from way deep inside her.  I thought it was asthma.  Last night she scared  me so I called the on-call pediatrician to see if I should take her to the ER.  He told me to count her breaths and if she took more than 60 breaths a minute, then to take her in.....but that if she wasn't, that I should just wait and take her to her pediatrician the next morning.  I only counted 45 breaths a minute so I held her all night, watching her....I didn't even sleep.  This morning when I woke up I called her pediatrician....he was not in the office today but I was told to go in and another Dr would see her.  We got there and they did her assessment.  They said her lungs sounded crackly....they immediately called the ambulance to come pick us up from the pediatrician's office to bring us up here to Primarys, just in case it was RSV.  We spent 6 hours in the ER, met tons of different doctors and nurses and residents and RT's....and I had to explain the same thing over and over and over again.  They suctioned her out and sent what they got to the lab to test to see where the coughing came from.....it was NEGATIVE for RSV!  That was the main thing, and the best news we could have gotten in this situation.....BUT she did obviously have something, so they still had to run some other tests to see what it was.  They decided to admit her to the hospital just based on the fact that she suffers from chronic lung disease, she's coughing, her lungs sound crackly, and her oxygen needs have increased.  At first, they said it would just be to monitor her, but it all depends on the results of the tests, and what it is she actually has.

I feel like a horrible mother.  I wonder what I could have done differently to protect her from this.  Why does my little baby girl have to suffer so much?  I'll gladly take her pain and suffering from her....she's gone through enough.  Only 12 days of her whole entire life were spent with her family outside the hospital....and now, here we are again, separated.....back to juggling kids at home and a kid in the hospital.  I'm so tired.  So sad.  So mad.  So emotionally drained.

Tea and Ma were sick the week we brought her home.  They were coughing pretty bad.  I had a really really bad feeling about it and I told Ova several times.  I tried secluding ourselves into our bedroom, but it's so dark in there since we fixed the windows so Ova could get some sleep in the day.  I asked them to stay in their rooms, but that didn't really work.  I was really worried so I asked Ova if either we could go to my parents house, or please go to a hotel or somewhere sterile where the coughing won't affect her.  They were coughing pretty bad, and they wouldn't always remember to cover their mouths.  They didn't do it intentionally, they never would....it's just that we have to be so much more careful with her than we had to with any of the other kids.  We actually left the house for a few days and took her to a hotel for a couple nights, just to get far away from the sickness (and to spend time with just our little family, finally all together)  it was a nice get-away, baby and I just staying in the nice sterile quiet hotel room and Ova, Makai, Mone and Lautala would go swim or go bring us food and treats.....and gave time for Tea and Ma to get over whatever it was they had.  I told Ova when we went back home that I still didn't want them to watch or even hold her for at least a week......because if she was still in the NICU, you can't visit if you've been sick within the last week.  I couldn't keep them separated forever though, I mean, they do live with us in our house.  As soon as I heard her cough, I knew she'd caught it from them.  :-(

Ova gave her a father's/healing blessing that was so beautiful.  I have no idea how long she'll be in here....hopefully not too long.  It all depends on what she has and if we caught it early enough to try and stop it before it gets full-blown. 

~Next Day~
So they found out what she has, it's the hMPV (Human Metapneumovirus)....it's just another virus that is going around right now, and I had the nurses bring me a handout with more information on it.  The handout just confirmed what I already knew:

Causes:  The virus is spread by direct or close contact with the respiratory secretions through sneezing or coughing of people infected with the virus, or by contact with objects and surfaces that have the virus coughed or sneezed on them.

I tried to keep her away from harm, I tried to keep her away from the coughing and the germs.....I had a bad feeling about it from the beginning.  I'm so sad she got sick.  What else could I have, or should I have done?  My poor baby girl :(

Today she has progressively gotten worse.  She's full of mucus and has to suctioned quite often.  They have to give her albuterol treatments with the nebulizer every 4 hours, and they started her on a 5 day steroid.  She's still coughing that deep hacking cough, and now everytime she eats she throws up because of all the mucus that's in her throat so she has to be suctioned right before she eats, and we have to pace her more slowly.  She's such a good baby though.  She's still not crying....even through all the coughing and suctioning....she's really calm.  She amazes me still at how much she goes through, and it doesn't affect her attitude....she's still so calm and consolable, only crying when she's hungry or when she wants me to hold her.  She's been wanting me to hold her alot....and I love it.  Makes me feel a little better that I can be here for her to comfort her now, even though I couldn't protect her from the virus. 

I really really really miss IMC.  I miss all the nurses there.  I miss my friends.  Today baby threw up all over....I mean ALL OVER....I pushed the nurse call light and nobody came.  I pushed it again and someone called and said they'd be in.  30 minutes later someone finally showed up.  Definitely not the kind of care we got at IMC.  I'm really overwhelmed with the outpouring of love and support from everyone.  My family and friends.....my IMC primary nurses, other IMC NICU nurses, my preemie parent friends.  Katea has SO MUCH LOVE from SO MANY PEOPLE....she's one lucky and loved little girl! 

The Doctor came in and talked to me today about the virus she has.  She said it typically runs a pretty predictable course.  Where it gets worse and worse and peaks at about day 5, and then it starts getting better and better.  Hopefully she'll get over that peak quickly so we can go back home and start working on her days spent at home being more than her days spent in the hospital!  Right now, the score is hospital-136, home-12.

Gettin' love from daddy....and a little pep talk to stay strong!

February 17, 2012

Meeting Baby Katea

I was wondering how Lautala would react to her sister coming home.  She knew that there was a baby Katea, she saw tons of pictures of her, and she understood that mommy had to go to the hospital every single day to see baby Katea.....but I didn't know how much she really understood that baby Katea was HER sister, and that she was coming home.  Monday February 6th, 2012 was the day we finally got to bring our baby girl home.  I was so happy and excited and anxious and nervous just wondering how coming home was going to be.  How would Lautala and the boys react to their new little sister?  How could I keep people away from her...how could I keep her safe from getting sick.  It's enevitable that she'll be around people, I mean, she has 3 older siblings that will be around all the time.  I was just nervous.  We had deep cleaned the house for her to come home...shampoo'd the carpets in the whole entire house, cleaned all the vents, scrubbed the walls.....just did whatever we could to get our house clean and ready for her to come home.  Ova and I even re-arranged our room so that the crib fits in there....and it's actually close enough to my bed that I can reach over an touch her if I wanted.  To me, it wouldn't make sense to put her in her own room....at least not at first, I NEED her by me....I probably wouldn't be able to sleep without her by me, especially with her monitors beeping all the time.

When we left the hospital on that Monday, one chapter of our lives closed and another one opened.  We pulled up to our house and this is what we saw:
My sisters had made this big huge sign and put it on the house (the NICU advised against having signs like this on the outside of the house, just because of crazy people and issues that have happened with people wanting babies and kidnapping them from homes they knew had new babies home....scary, I know)  My baby girl is loved so much, and I was grateful that they took time to make this sign to welcome her home and show just how much she is loved.  We ended up taking the sign down and putting it inside!  They also brought a ton of pink and white balloons for inside the house (Lautala and Mone had a ball with those!  haha)

When we got inside the house, this is what we saw:
Ova's sister and neices and nephews made a sign for the inside of the house too.  With a lot more balloons.  Everyone was so excited to finally welcome her home after a long 4 months!

The first thing I did was look for Lautala, who was sitting on the couch.  I walked in and sat baby Katea in her car seat down on the floor and all 3 of my older kids ran to her.  They lifted up her little blanket and were so happy to see her.  Lautala was so cute, she kept saying "baby Tea" "baby Tea" over and over again.  She was very gentle and soft with her and she kept kissing her forhead softly, she stood by her for a while just staring at her.  It was precious!  Makai and Mone admired her for a few minutes, then they went back to playing, but Lautala couldn't get enough of her, she just stood right by her making sure to bend over and kiss her every few minutes. :)

That day was not only the first time for her sister Lautala to meet her, but it was the first time for her great-gramma to see and meet her too....and the first time for her namesake Gramma Katea to see her since she was 2 weeks old.  Everyone was really emotional to see and finally meet her!

Gramma Tea's first time seeing her at home
Ma's first time ever meeting her



We put hand sanitizer bottles everywhere throughout the house and made sure that everyone that came in washed their hands and put hand sanitizer on.  We already told our families how we're supposed to keep her away from large groups of people, and especially a lot of little kids, so they already knew and understood.  My sisters came to visit that day and so did Ova's brother.  As much as all the kids wanted to come, our siblings didn't bring them....and I was grateful for that!  We just need to remember how critical she is, and even though she's home, she's still sick...she's still on oxygen...and if she catches anything or gets sick, it would be like 100 times worse for her because of her fragile condition.  We just spent almost 5 months in the hospital trying to get her home....and now that she's home, we don't want to do anything that will make her have to go back!

She's been home for a week now, and it's been great!  She's such a good baby, which we are so lucky for!  We've actually been really blessed with kids that don't cry that much....Ova and I were talking about that the other day, none of our kids were crybabies!   Baby Katea sleeps most of the day still, but when she's awake, if she's full, she can lay on the floor on her back just kicking her legs and looking around for a long time.  Her oxygen is annoying, especially the BIG concentrater that I have to carry from room to room, and her monitors and things....but she NEEDS it!  There have been a few times since she's been home that she's showed us that she absolutely needs it.  Hopefully sometime in the near future, we'll be able to start weining her down so she doesn't need it, but for now....she's very very dependent on it!

She's beautiful and we're so in love with her.  We catch her smiling a lot, especially when she's sleeping.  Her brothers and sister smother her like crazy, but it's funny because she just looks to the side and lets them....almost with and annoyed "hurry up" face....haha!  I am so happy that all my family is finally home together under one roof.  It's been so nice not having to juggle my time between my kids at home and the hospital...and being with all of them all the time.  Love my little family!

February 13, 2012

Difference of a few days

I dropped my touch phone and shattered the screen back in August.  It had a screen protector on it, so even though there were a million tiny pieces of glass....they were still in place under the screen protector.  I do have insurance on my phone, but when I went in to replace it, they said because I was the one that dropped it....and it wasn't a technical problem with the phone, it would cost me $100 to replace it.....I decided that was stupid, and I continued to use my broken phone....lol.  It actually worked just fine and once I got used to having to look through the cracks of the broken glass to see my text messages or pictures, it was no problem.  This month makes 6 months since I've been using my broken phone.....and everything was still working just fine, until my 2 year old Lautala decided it would be fun to pull the screen protector off of it.....which made all the little peices of glass start to fall out :(  I did try to put the screen protector back on, to save it....but by that time a lot of pieces had fallen out and the protector didn't lay down flat because of the glass peices that were still there.  Bummer.  I was hoping to be able to wait until I get my upgrade so I didn't have to pay to get a replacement of this phone.  I had no other choice but to cave in and pay the $100 to replace it (I'm such a cheap skate, I know...lol)

I paid the $100 and got my new phone and as I was transferring all the info I had from my old phone to the new one, I realized something that may seem irrelevant to most, but was a huge shocker to me.  I found my little phone app that I used to use all the time.....the P&O tracker, which tracked my cycles from way back when........and I noticed I was off by 4 days.  I don't know how that happened, except I remember at my first doctor's appointment when I found out I was pregnant, he asked me when the last date of my cycle was and I couldn't remember exactly, so I guessed a date and told him it was around that certain date.....he wrote that date on my charts, and that's the day we went with.  BUT according to my phone tracker (which is 100% correct), I guessed 4 days later than actual.  That 4 days is A LOT in the preemie world.  That means that my baby Katea wasn't born at 25w2d like we all thought she was.....she was actually born at only 24w5d.  How does this change things you might ask?  Well, it doesn't really.....she was still born way too early and she is still amazing!  What that means for me is that really, she had 4 less days in the womb than we have been giving her credit for.....4 more days of work that she had to do that we didn't know about.  That makes her even more amazing, because it makes her original chance of survival even less.  Maybe it's completely usless information, but to me it's amazing.  That means that when I was originally admitted to the hospital, I was only 22 weeks.... THANK GOODNESS I didn't have her that day!  That two weeks spent in the hospital helped her get to the critical 24 weeks.  Wow....it's amazing to think what a difference 4 days makes!

**Still have a lot to catch up on, but this is what has been on my mind since I cleaned out my phone, so I thought I'd blog about it!  :)  Baby Katea is still....and now even more so.... my MIRACLE!

February 10, 2012

Home Sweet Home!

Wow, I have SO MUCH to blog about.....but finding the time or energy has been the struggle!  My baby girl got the ok from the optimologist to be discharged from the hospital on Monday.  Her eyes are not completely mature, but he felt good with letting her go home (since she was already on 100% oxygen for the last couple days), plus he said they're so close that they would probably be mature in the next couple days, and I have to take her up to Primary's Moran Eye Center in 2 weeks to follow-up.  That means 4 1/2 months, 134 days in the hospital since she's been born....and she was finally healthy enough to come home!  That day was a very emotional day.....I woke up in the morning in anticipation of the results for the eye-exam....the optimologist was supposed to be there at 9am, but 9, 10, 11 o'clock passed and still nothing.....my nerves were on edge, I was sitting in baby Katea's room talking to Stacey and everytime someone would walk into the pod, we'd both stop talking and jump to look at who it was, seeing if it was the optimologist......both our hearts were racing.  He finally showed up at noon and they sent him straight back to our room to do baby Katea's test first.  I didn't want to be there for the exam, so I went out to the hall.  After a few minutes, Stacey came out the door with two big thumbs up in the air.....and she was crying.  I immediately got teary eyed, but I didn't cry like I thought I would.....I think it just didn't really hit me.....in the back of my mind, I was talking myself into accepting that her eyes were close, but still not mature, and we would probably be spending another week at the hospital.  The thumbs up meant she was cleared.....we were leaving the NICU!



Everything went pretty quickly after that, we went back to her room and started packing up all her things.  She had definitely accumulated a lot of things in the 4 1/2 months she was there....lots of pictures, stuffed animals, supplies, etc.......Ova and I were putting things in bags getting ready to take everything to the vehicle while Stacey fed and cuddled with baby Katea one last time at the NICU.  I was packing up all her belongings and putting things away, and I wasn't crying.  I don't think it really hit me that we were actually leaving the NICU, with our baby girl, and I realized that I didn't have to go there every single day anymore.  The NNP came in and went over the discharge papers, I signed everything I needed to, they wanted to make sure I was comfortable with having to possible revive or stimulate her if she happened to have an episode at home...as scary as that sounds, yes, I am comfortable with it....we set up her home monitor and oxygen tanks, and we headed out.  That was it....in an instant we went from long-term NICU residents, to going home.  As we walked out the doors of pod C, it hit me like a ton of bricks....and I lost it.  I cried big huge tears.  Those tears were happy tears because my baby was going home, and sad tears because I was leaving.  I know that sounds crazy, but this had been my home for such a long time.  The nurses who took such good care of me and my baby were my family....everything was about to change.  Stacey carried baby out and I stopped and hugged a few people that I saw on our way out the door.  Can't believe this chapter was finally over, it took forever, yet went by so fast.  I sincerely will miss all the friends I made at the NICU.

I'm going to miss wearing my bright lanyard with my yellow NICU PARENT badge, I'm going to miss being able to enter my own personal code that gets me past the L&D doors, when everyone else has to wait for a nurse to get entry to.  I'm going to miss pushing the button to buzz myself into the NICU and having the recptionist look through the window, and without needing to ask any questions, just buzz me in and immediately tell me how my baby was doing, or how cute she is.  I'm going to miss having little conversations with whoever I see in the lobby as I wait for my turn to scrub in.  I'm going to miss scrubbing in, up to my elbows for 3 minutes every single time I enter the NICU, I'm going to miss scrapbooking on Tuesdays, and parent support meetings on Wednesday nights.  I'm going to miss sitting in the hall during the NICU break, on the bench that I push behind the tree.....blogging and having conversations with the nurses that are just getting to work for the night shift.  I'm going to miss sitting in my baby girl's room watching her sleep, having long old conversations with the nurses, whoever was assigned to take care of her.  I'm going to miss the other NICU moms that I've made friends with.  Getting updates on each other's babies anytime we run into each other, celebrating the good news and progress made, and crying with them at the set-backs.  I'm going to miss the excellent care and love both my baby girl and I got while we were there.

Now we've been home almost a week, and I'm totally and completely sleep deprived.  Lol.  Part of it is that that's just how it goes when you bring a new baby home....part of it is that I'm trying to get used to all the monitors that are constantly beeping....part of it is that me and my older kid's schedules are so jacked up, and have been for a while.  The nurses have Katea on an awesome schedule where she's awake most of the day and sleeps for long stretches throughout the night....which would be awesome if I could get my other kids on that schedule too!  Lol.  She's doing so well at home.  She still de-sats quite a bit, but I think I'm finally used to handling it.  She was on 1/32 of a liter of oxygen per minute at the hospital, needing to be turned up to 1/16 of a liter during feedings or sometimes when she sleeps.  She's actually needed a little more since coming home.  She's needed 1/8 liter of flow all the time....which is ok, it's probably just the change and everything that's so new to her....and hopefully we'll slowly be able to wein her down until she's completely off of it.  It'll be nice to be able to see her little face without any cords or tape all over it.

She is amazing though, and I'm so happy to have her home!  I have kept in really good contact with my primary nurses....I text pictures, and messages to them.  Anjanette texts me every single day asking how chubs is doing.  She is very loved, and just because we're not there in the NICU anymore, doesn't change that love.  I'm so grateful!

Still have A LOT of updates in the week we've been home, but all 4 of my kids are finally asleep at the same time....so I'm gonna take advantage of this time to sleep too!  :)  More updates coming soon!

February 6, 2012

9lbs!

Can you believe it?  My little 1lb. baby girl hit 9lbs. tonight!  I remember when she was first born....I told the nurses that I didn't want to take her home until she was at least 8 or 9 pounds.....because all my older 3 were that big and I wouldn't know what to do with a baby any smaller.  The nurses all giggled with me and told me that she'd probably be around 5lbs when we bring her home.  Can't believe she acutally hit 9lbs today.  That's a HUGE accomplishment....she's gaining weight and growing so well!

Tonight marks 7 days without any bradicardic episodes!  Yay!  That was one of the major hurdles that was keeping us at the hospital.....now that that's out of the way, we're just waiting for developed/mature eyes!  Tomorrow is the day of the big test.....the day that will let us take her home, or keep her here for another week.  Crossing our fingers for mature eyes!

Last night when Ova and I stopped by to visit, we finished everything else we needed to get ready.  We watched all the necessary videos:  The period of Purple Crying, a Carseat Safety video and a CPR video.  And last night during the night, Meredith did the carseat test with her.  I got a text from Meredith at about 2am.....this was the text:
Okay mom I am ready!:)

Tonight I'm rooming in with my baby girl!  They have these two hotel-like rooms just down the hall from the NICU, the rooms are simple with just a queen size bed, a bathroom, a rocking chair and a breast pump....it's actually really nice to have the option, and I'm so grateful for it.  We stayed here once before when baby was having a really bad day....it's was just nice to be somewhat close to her, even though we weren't together.  Tonight is different though!  Tonight she is with me!  Tonight is the first time I get to sleep with my baby girl after almost 4 1/2 months.  Unfortunately Ova couldn't get the night off work, so it's just me and my baby girl.  We rolled her little crib into the NICU hotel and I'm just sitting here staring at her.  She's so big, she's so beautiful, she's come so far....she's amazing!  They give the option to parent's who are almost going home, the option to stay in the NICU hotel for one night before taking their baby home....just to get used to all the monitors, the beeping and dinging....getting used to watching her oxygen saturations on my own and making sure she's breathing and ok.  It gives me the opportunity to be a mom...all by myself...without having any nurses interveining....BUT still having them close by in case anything goes wrong or in case I need them.  I brought her to this hotel room at about 8pm....it's now 1230am and she's still sleeping.  The nurses are amazing and have gotten her on a good schedule.  She's awake and wants to play during the day, and she sleeps for long stretches throughout the night.  I was told she'd proably wake up at about 1am, just to eat, and then she'll go back to sleep for a few more hours.  How nice!  Wonder if she'll keep this awesome schedule once she gets home!  haha....we'll see!

Yesterday was the last time Meredith will get to take care of her (if we go home tomorrow) and today was Stacey's last day.  It was hard saying good-bye to them.  I'm really going to miss them, and I'm so grateful for them!  Tomorrow Charise is working and Annica is charging....I'll get to thank them and say good-bye to them.  Our NICU journey is almost over.  4 1/2 months, 134 days.......a LONG time, that actually went by pretty quickly.  So grateful for this experience, so grateful for the lessons learned and the life-long friends made.  We are better, stronger people for having this experience....we have a beautiful baby girl.....we recognize and know how blessed we are, and we are SO blessed!

February 3, 2012

Primary Nurses

Primary nurses are nurses we picked, and who picked us to help provide more consistant care for our baby girl.  When they are working, they are the ones taking care of Katea.  We were so lucky to have gotten all of the nurses we picked to primary for us.  I've been talking a lot about baby Katea's primary nurses.....how great they are, how much they've done for my baby, how much we love them....so I thought I'd post a few pictures so you can put a face to their name!
Anjanette

Meredith

Stacey

Charise

Annica

These 5 women are amazing!  I will never ever forget not only what they did for my baby girl, but how much they loved her.  Life in the NICU can get really overwhelming at times, but thanks to these 5 ladies, who were not only our nurses, but our friends.....we were able to survive 4 long months at the NICU.  They were baby Katea's 2nd mom when I wasn't there, they watched her grow.....no, they helped her grow from a teeny tiny 1lb baby into an almost 9lb baby.  They are miracle workers, and I know that my baby girl is alive, and healthy because of the excellent care and love she got from her primary nurses.  Even though we'll be leaving the NICU and won't get to talk to them or see them everyday, they will forever be a part of our lives, and espeically baby Katea's life.  We will make sure she knows all her NICU aunties!  :-)

If any of you 5 are reading this....THANK YOU!  Thank you, thank you, thank you!  I know saying it is not even close to enough, but really....Ova and I thank you so much for everything.  We love you all!

February 2, 2012

Surprise!

Today when I got to the hospital, Stacey was so excited to tell me that baby Katea had a surprise for me.....I LOVE surprises so I was anxious to see what it was....as I walked into her room, I scanned around and didn't really notice anything different.  I looked at Stacey all confused and she told me that they switched her oxygen to wall-flow.....which means low-flow, scant flow....100% oxygen, the kind she's going to come home on!  At first I was so excited, but then I got scared.  I just kept thinking over and over that her eyes aren't mature yet and I've been told over and over that it's the oxygen that damages the eyes....how could she be on 100% oxygen if her eyes aren't mature yet?  She told me that baby was only on 1/16th liter of 100% oxygen, and they were watching her saturations really really closely making sure she doesn't high-sat too much.  As long as her saturations stayed within the parameters of 88-94, she would be fine.  How exciting!  She's always been a yo-yo'ing type of baby....she'll go super high on her saturations, and then dip really low in just seconds....she's always been one to make the nurses chase her....lol (a lot of personality already...hahaha)  But, the changing of her oxygen to the scant seemed to help her be more stable, which was so nice.  The move to scant flow also eliminates the Fi02....now if she needs a little help, they adjust the flow from the 1/16th to how ever much she needs.  What a great surprise!

The decision to do that was made by the neonatalogist, to help get her home sooner.  Originally the plan was to wait until her eye-exam on Monday, and if her eyes were mature, they would switch her over to the scant flow....where she would need to be monitored for 24-48 hours before she could actually go home.  By switching her now, they're able to get the monitoring out of the way so that on Monday if/when her eyes are mature, we can go home!  Wow!

They gave me a list of things I had to do before I can actually bring her home, sort of like a check-off list. 

-I have to bring in her carseat so they can do their carseat test, which is where she has to sit in her carseat for 90 minutes without having an episode, or without a severe de-sat

-We have to watch a few different videos.....just different things we need to know in case something happens once we get her home

-We have to schedule night to 'room in' with her....they have these two rooms at the end of the NICU hall, made especially for parents who are taking their preemie baby's home.  It's such a nice thing, especially if you're taking your baby home on oxygen and monitors, because you get to spend a night alone with your baby and all the monitors......and if you feel overwhelmed, have any questions, or need help with anything, the NICU is right there.

- We have to take and pass a CPR class

Tomorrow I will take the carseat in, we will watch the videos this weekend....(I wanted to wait until Ova was off so we could watch them together), We're going to 'room in' this Saturday, and we took the CPR class last Thursday.  OMG, it's really going to happen.  My baby girl is really going to come home.  I can't believe it....4 months 1 week 4 days is how old she will be on Monday....seems so long, seems so short.  Finally our family is going to all be together.  Overwhelmed.  So nervous, happy, excited, anxious and sad.  Sad to be leaving this place I've called home for the last 4 months.  Sad to be leaving these wonderful people, the IMC NICU staff, the other NICU parents, the common bonds ladies.......If it were up to me, I'd never have chosen to be handed this experience.....but I'm so glad I was.  My life is forever changed being a mom of a micro preemie baby.  I am blessed.  I am grateful!

I've been putting a few things together for our primary nurses, and for all the NICU staff.....I just feel like I can't thank them enough for everything they've done for my little girl.  Nothing I could do, or make, or give them would be enough.........for saving my baby girl's life.  I am forever grateful and indebted to them.  I'm not sure if we'll be here past Monday, so I've been asking around to make sure my primary nurses will be working before then.  Thankfully all of them are.....except Anjanette.  I haven't seen her for the past few days, so I text her tonight to see when she works again.

Me:  Hey girl....when do u work again?

Anjanette:  I do not work until Tues then Fri, Sat.  Sorry for not visiting u, things have been crazy with my assignments.  How is chubs doing?

Me:  She's good...did u know they switched her to scant flow today and I think they said she's on 1/16th of a liter

Anjanette:  Good girl, I knew she could do it.  So is she here until a least Monday for her eyes?

Me:  Yes....and they said she'll go home on Monday if they're developed....does that mean we won't see you?  :-(

Anjanette:  Could be, but if so I will stop by ur house so I can give u her gift I have not brought it in yet

Me:  Awww...Katea has something for you too!  Gosh, now I'm gonna get all teary-eyed...

Anjanette:  U r silly, this is a good thing and we can still be in contact

Me:  I know, I'm just a crybaby....and I get attached...lol.  Thank you so much for everything!

Anjanette:  Yup.  I should be the one thanking u two for being the best parents and making this time a good experience for everyone.

I cried all the way home.  I know it's a good thing....it's a GREAT thing, and I know we'll keep in touch....I'm just sad that I didn't give her a BIG hug and thank her so much for everything she did for us.  She was the one that took baby from my stomach on the operating table and rushed her to the NICU, she was the one who put her on the breathing machine to keep her alive, she was Katea's nurse for the first critical nights of her life...when we weren't 100% sure she was going to make it and be ok, she's the one that's been there from the very beginning...through everything.  When we first chose her to be our primary nurse, she didn't answer for a few days.....she came into our room one night and told us that she doesn't primary very often because she's pretty possessive, and she is!  She LOVES Katea, Ova and I see and feel it from her.  I'm so so grateful for her....and Meredith, Stacey, Annica and Charise.....all our primary nurses!  I've actually been getting really emotional for the past few days, just at the thought of leaving the NICU and bringing baby home.  Don't get me wrong, I've been waiting for this day since the day baby Katea was born, but I'm going to miss all the friends I've made there.  I was telling Ova that the only other time I had this feeling was when I was getting ready to leave my mission and come home.  As much as I was excited to come home, my heart was sad to leave the people....my friends, the people I had grown to love.  That's how I feel right now, I'm so excited, but my heart hurts that I have to leave the NICU people that I love.  I obviously don't deal with change very well....but one thing is for sure....they will ALWAYS ALWAYS ALWAYS hold a very special place in my heart, and my little miracle Katea WILL know them!