Monday, May 28, 2012

Thomas the Train


Through all of the craziness this week we managed to take the kids up to Heber to see Thomas the Train. The wonderful staff at primary's gave us tickets to ride the train before it was open to the public. They had reserved the train and it was free to all primary childrens patients and there families, the KIDS love Thomas so I knew I had to take them. The only time that was available was at 10:30 am so daddy couldnt come :( but we decided to invite both grandmas along:)
 This year the train ride was longer and halfway through the ride we stopped at "another train stop" and they had a little skit prepared for us.. Ryker LOVED having the pretend "robbers" get on the train!! Briyler was TERRIFIED of the robbers fake gun and i'm pretty sure grandma still has marks on her arm from where Briyler was holding on.. ( He had a death grip) ... the robbers were looking for the "money box" they made everyone put there hands in the air while they searched for it:) Once they found it they "shot it open" only to find a stuffed duck.. Ryker thought that was the funniest thing on the PLANET he has talked about the skit non stop the last couple days. The younger kids did ok on train, they climbed between Me, My mom and Trish the whole ride but I think they had fun..  It was nice to get a way with the kids and do something fun together. I miss them all soo much and I cant believe how big they are all getting! I love seeing them smile and I love making memories with them. I hope one day they will cherish these memories as much as I do. :)

I dont know why the pictures are showing up sideways but oh well:)

Briyler would only take the picture if he was "allowed" to hold the rock:)

Grandma's and the kiddo's

Rykers "spider man" pose

Mom and the 3 crazies

Pipa girl!

I cant even believe how big she is!

A week I will NEVER forget!

This weekend has been an eventful one: (I wish I had taken pictures of ANY OF THE EVENTS:) OOOPS, I do have one picture of Pipa girl, it is just crazy to me how big she is getting:( :(

 Saturday morning: Kaj and I went to the temple with my mom and dad and Kaj's mom and dad.. I SOOO NEEDED that session! I love how close I feel to the Savior in the temple. Kaj and I don't make it to sessions as often as we would like but I think we are going to set a new goal to try and get there TOGETHER at least once a month. Hopefully we can make that happen:)

Saturday afternoon:  my mom and dad picked up the kids from my Aunt Lisa's house and Kaj and I headed to the hospital to sit with Tallin for a few hours.. He seemed to be doing ok but still recovering from the CRAZY events we had earlier in the week

Saturday night: we got together for a game night with some WONDERFUL friends

Sunday: a "duel" ward fast:) Our ward and my moms ward, it is soooo wonderful to have such amazing neighbors and to live in such a generous and kind community.. Thank you to everyone who fasted in our behalf, I felt such an overwhelming amount of love on Sunday and I know it was because of all of you.
We also had Kaylee's HOMECOMING.. Wonderful sacrament meeting and then headed over to Tiffany's for some YUMMY lunch!
and game night with my family... My youngest brother was in town from california!! It was nice to have him home for a few days:) We love you Uncle Coby..

I definitely needed the busy weekend. Last week was probably one of the scariest weeks Tallin has had since we he's been born . I, for the VERY 1st time since he was born wondered if he was going to MAKE IT. It is the most heart wrenching feeling I have EVER FELT. I will never forget how helpless and scared I was in that moment!! Tallins  heart rate was really high and the doctors couldn't figure out why, he was having intermittent desats (oxygen levels dropping) and he seemed to be working really hard to breath. The doctors thought at one point all of his agitation was coming from being intebated so they decided to turn off the ventilator and take out the tube. Tallin passed 2 "spontaneous" tests (failed 1, only because he was so agitated or at least thats what they thought) before they took the tube out, just to make sure he was ready. The doctors really felt like the only reason he was having problems was because he was trying to breath more on his own and the tube was making it uncomfortable for him. Soo the decision was made to exibate him (take out the tube). Immediately after taking the tube out Tallin went down hill, he started working REALLY hard to breath which all to quickly turned into him gasping for air. The doctors were trying everything to help him catch his breath but nothing seemed to be working. They went from a regular nasal canula, to the CPAP machine, then to the BPAP machine then to the doctor using the bag and mask, NOTHING WAS WORKING and by the time they had used all of these items to help him breath 4 1/2 min had passed. Tallin went from a very dark blue to a gray-ish color and the doctors put out a call for an EMERGENCY RE INTEBATION. Pretty soon we had every doctor on call in our room and most of the nurses in our unit, within minutes the tube was back in and the levels were put at the highest setting. Tallin came back and seemed to recover his vital signs pretty well, but the doctors were worried about

A: what caused him to stop breathing when they took the tube out (since he was doing so well and since he had passed 2 "spontaneous" tests.) and
B: was there going to be any side effects form him not breathing for almost 5 min.

The doctors did a bunch of blood work, an xray and a full MRI the next day, just to make sure they weren't/aren't missing anything. EVERYTHING CAME BACK NORMAL!! The doctors say they are pretty puzzled that he is struggling soo much with nothing other than the virus.. They think that developmentally he is fine and that we just need to continue to watch him for the next couple of days. They want to start to turn down the vent settings again and see if we can slowly move to trying some more "spontaneous" trials for him. They are hoping they can try and take out the ventilator tube within a few days.

As for now I am singing to him and holding his hand as much as they will let me so he knows I am here for him, and looking forward to the day they will let me start holding him again. Nothing is better for new born babies than the "touch of a loving mother" ... ** thank you to the wonderful nurse who told me that, and who told the doctors that her diagnosis would be for me to be able to hold him all day long.:)  They are very sweet and I feel like the genuinely care about Tallin and his well being.

Things are slowly moving along and hopefully Tallin will start to prove to us that he is getting stronger and healthier with every passing day:) 

Monday, May 21, 2012

a sweet blessing and finally being ventilated.

Sunday morning Tallin's xrays were looking pretty bad and the doctors were leaning on the idea of putting him on a ventilator and trying other methods to help get his lungs to pop open, when I heard this I was a little nervous, and my father in law suggested that we should give Tallin "a name" and blessing while he was here at the hospital. Kaj called me and let me know that he thought it was a good idea and he had already talked to the bishop and everything was set to go. My mom, dad, Kaj and a member of the bishopric (and family friend Wyatt Barrett) came up to the hospital, Kaj asked my father in law to give the blessing and can I just say how BEAUTIFUL IT WAS!! I wish I could remember every word of the blessing but all I really remember is feeling the spirit soo strongly.  I love the blessings that the priesthood bring and I love the comfort that those blessings always seem to bring to me. (and it was a good thing I had that to draw from)

After the blessing had finished and everyone left, things kind of calmed down and I was hoping that things were looking up for Tallin. They ordered the usual daily xray Sunday and Monday night and not only was he not making progress he was seeming to get worse. Tallins left lung is still completely collapsed and his top upper lobe had collapsed again. Since we have been in here for 6 days they are worrying because he is STILL not making progress. Today (Tues may 21st) we noticed that there was a significant change in Tallins breathing, he seemed to be struggling A LOT! His stomach would retract soo deep every time he would take a breath and you could just see that he was having a hard time. He had 2 desats this morning (drops in his oxygen level), that may not seem like a lot but he hasn't had ANY in the last few days so it was just another sign that he is struggling a little bit more today. The doctors turned up the oxygen level on his CPAP for an hour but after seeing no change they decided it was time to ventilate him. The doctors explained how the procedure would go and what would happen.. He would be heavily sedated and also get a parasitical so he wouldn't be able to move while they were trying to put in the tube. (a med that temporally paralyzes him), I asked if I could hold him before they did the procedure and of course they let me. I got to hold him for an hour before he was sedated. It was the sweetest hour we have spent together since he's been born. He was completely awake for most of it, he was smiling  and making all sorts of cute faces for me, it was such a precious moment and I really think I needed it! I hugged and kissed him Over and OVER and OVER!!
We are hoping that his next xray (4am wed morning) shows lots of progress. The goal is to have him off of the ventilator as soon as that left lung pops open (1-2 days HOPEFULLY) ....

Heartbreaking:( :(

Friday, May 18, 2012

its just been a CRAPPY week and thats all there is to it!!


Yep today was one of those days, FULL OF EMOTIONS!! Its not always a bad thing to let out a good cry and today I have had my fair share of "good cries" but just when I thought I was done it hit me again, FULL FORCE !! (Even worse than this afternoon)

I left the hospital today to attend a funeral with Kaj for his sweet cousin Ryan Lott.. He was only 14 and died of a heart attack. This month has been a tough one for my in laws side of the family, another one of Kaj's Dear cousins gave birth to a beautiful baby boy, he had Trisomy 13 and only lived for a couple of hours. There is something about having to send a child home to Heavenly Father that is soo heart wrenching. I mean you know they are in a better place and that they are needed in Heaven much more then they are needed here on earth but I imagine that it doesn't make it any easier to accept. Your babies and children are not supposed to be "called home" before you are, If I could write my own rule book that would be #1!!

After the funeral I headed back to the hospital, (by this time I had ALREADY hit my limit probably even PASSED the limit for the # of tears allowed in a day), I had been calling during the day to get updates on Tallin so I kind of knew that things were getting worse but for some reason when I walked in the room (nothing had really changed with his appearance: he is still on the CPAP just a higher flow so it sounds a lot more intense, he has the feeding tube that goes straight into his intestine and then the regular monitors for his vital signs,  but for some reason I just LOST IT!!) I am  happy that he is in the best place possible for sick babies but my heart is breaking having to see him like this!! I hate seeing him struggle, I hate that he cant breath well enough on his own, I hate seeing all of these tubes attached to his body, I hate hearing the monitors go off *CONSTANTLY reminding me that he still isn't well enough to go home*, I hate that I cant cuddle him whenever I want, I HATE IT ALL!! You are not supposed to watch you children struggle like this, you are not supposed to hear a Dr say "say if he stops breathing for more than 45 seconds hook him up to the vent", or "both of your sons lungs have collapsed and we cant get the them to pop open".......... I can usually find the positive in trying times but today I don't even want to pretend there is a positive, its just been a CRAPPY week and that's all there is to it!

*Tallins update: he has had 5 chest xrays in 2 1/2 days. The top upper lobes of Tallins lungs have collapsed, his left side is worse than his right, but both sides have gotten increasingly worse every day,( I think the upper and middle lobe on the left are both collapsed as of this morning). For now they are changing the amount of pressure and oxygen that flows through the CPAP but if things don't change for the better soon, and I mean REALLY SOON, then they are going to have to put him on a ventilator and probably do some really invasive procedures to help re inflate his lungs and they might throw in a heart echo just to give me 1 more thing to worry about:) He has a disgusting amount of mucus that has to be suctioned out of his nose and throat every couple of hours and he gets poked almost daily for some kind of lab... I am REALLY hoping the xray they *just took* comes back with some kind of improvement!  PLEASE PLEASE PLEASE show an improvement!!

Tuesday, May 15, 2012

Back to the PICU (Pediatric intensive care unit)

Poor little Tallin didn't last long outside of the NICU. In all fairness Kynlie has a fever/ runny nose and Briyler has a bad Seal cough (I'm sure if we take him in they will tell us its croup/wooping cough), so its not really Tui's fault we are back here:)
None the less Tallin started having problems Monday night. He would "desat,* his oxygen levels would dip", this isn't all that unusual but usually when he dips he stays in the low 80's or high 70s and its only for a second or two and then he brings himself right back up. I noticed that he was dipping a little bit more than normal but I wasn't alarmed at the numbers so I just let it go. Tues morning rolled around and I knew that he had been dipping more than usual during the night ( I got pretty much 0 sleep) so I continued to watch him during the day and on a few occasions I noticed his oxygen levels dipping a little bit lower into the 70's and he seemed to be hanging out there for more than just a few seconds. Kaj and I were a little freaked out, but still we just decided to "watch him".. As the day went on he just got worse and worse, until eventually he was dipping down into the 20's and staying there for SEVERAL seconds, YEP that means he also had a couple instances where he would "change color" either dusky or blue.. TOTALLY SCARY, so I called my visiting teacher (who is a nurse) and asked if she could come over and make sure Kaj and I had the oxygen system set up and that his monitors were reading the right way. We really wanted to be sure that we weren't doing something wrong and causing all of this DRAMA:) Kim stayed and observed him for a good 35 min and he did great for her. As she was leaving she told me to call her if he dipped lower than the 40s and if he had any sort of color change, by the time 10pm rolled around we knew we were going to have to take him to the hospital and I KNEW I DIDN'T want him to be at the murray hospital so it was OFF to PRIMARY CHILDREN'S, I called Kim and asked if she would go with me since he was struggling to breath I didn't want him in the back seat by himself. :) Tallin had a few bad desats in the car (complete with color change and all) and then a few while we were in the waiting room. Luckily the Doctors at primarys dont mess around, they immediately took us back and started to monitor and observe Tallin. The Doc on call was FANTASTIC, we hadn't even been there an hour and he had already ordered a lumbar puncture, chest xray, and multiple labs/cultures. They did more in the first hour than the Murray NICU did in a FULL MONTH!!!
 As of now the only thing they can find is that he has RHINO VIRUS which is just a "really bad cold" that effects the respiratory system in babies and reflex (which they started him on meds for, and he seems to be doing a lot better with that). They are hoping that once he gets rid of the cold his oxygen levels will start to come up on there own. At one point (when he was dropping in the 20's and 30's) they wanted to put a ventilator in but they have since decided to hold off on that and just see how he does on his own, since he hasn't been "desating" nearly as much today. I am hoping things start to pick up tomorrow and he makes a lot of improvements on his own..
In all honesty it is better for that Tallin is here for the next few days, it will hopefully give Kynlie and Bri the time they need to get better!

and just so Daddy knows::  Love you Honey hang in there!!!

Thursday, May 10, 2012

Family of 7, AT LAST!!


YESTERDAY was FINALLY the day (May 9, 2012, exactly 1 month from the day Tallin was born) we FINALLY got to bring baby Tui home and we couldn't have been more DELIGHTED! Yesterday was a VERY emotional day for me, I couldnt decided what I'm feeling:

*HAPPY- we get to leave the NICU,
*EXCITED- to have the other kids meet Tui for the VERY 1st time,
*NERVOUS- I'm not going to be able to take care of 5 small children all on my own!,
*AFRAID- what if something happens, with Tui's oxygen or while he's sleeping!!!
*HUMBLED- A very sad reality check for me not every baby that comes to the NICU makes it home, I am very grateful that Tallin is a healthy happy premie.

Kaj had a ton going on with work yesterday so we asked if we could have a late discharge time. We didnt actually leave the hospital until 3 or 4 this afternoon, so I had most of the afternoon to soak up every last MINUTE with little Tallin before the chaos of home begins. Don't get me wrong I am THRILLED to see the other kids and to finally have all of us together, but for the last month I'v been able to spend the majority of my day taking care of JUST Tallin and monitoring him without any distractions. Which has been kind of nice, I have Loved all of the little special moments I'v been able to share with him,

*His sweet little smiles.
*Our tender cuddle sessions after every feeding.
*The cute sounds he makes right after he finishes eating
*He really wants to suck his thumb (but mom wont let him)
*His super MELLOW personality (as of now anyway, he hardly EVER CRIES)
*He loves it when I sing to him (even though I have an awful voice:)
*He smacks his lips when he's hungry
*and I keep trying to get him to take a binkey but he just ISN'T interested!! (please just take the binkey little man)

I will never forget how hard this time in my life has been for our family. It has been a true test of faith and endurance. There were MANY times over the last 4 or 5 months that I didn't think I would ever be able to make it through these trials or that I  really considered giving up because I thought it sounded like it would be SOO MUCH EASIER, for EVERYONE.. But I am soo grateful for these trials and how much they have taught me about myself and about the unconditional LOVE FROM MY Heavenly Father. He has comforted and blessed our family more times than I can count over the last couple of months and years.. Its really helped me understand the Love that a parent has for their children, *wanting soo badly to take away all of the trials and hardships but also wanting them to learn the valuable lesson that is awaiting at the end of the trial. I am so grateful for the lessons that I'v learned and for the comfort that Heavenly Father gave me during times that felt like they were to much to bear.
I think their are  2 major lessons that I want to remember from this whole experience:
**Take life "LINE UPON LINE PRECEPT UPON PRECEPT" one day/step at a time... I cant expect to have all of my questions answered right here and right now! Things happen when they are supposed to happen and sometimes situations come up that we think are just plain "NOT FAIR" but for me part of the lesson was learning to TRUST in the Lord as well as in his timing.
**and ENDURE TO THE END, no matter what and now matter how hard things seem to be, NEVER GIVE UP.. Heavenly Father doesn't leave us to "figure things out on our own" during our trials. If we can humble ourselves enough to ask for his help and if we will be open to learning the lessons that he is trying to teach us He will be with us every step of the way..
I have felt his LOVE on many occasions I have spent a lot of time on my knees talking and crying , telling him my fears and doubts, not asking him to take this trial from me but asking him to help me feel comforted and at peace with whatever the outcome was going to be. I feel very fortunate to have 5 HEALTHY CHILDREN, and the thought of Heavenly Father trusting me with so many of his small children is so fufilling to me. I LOVE YOU TALLIN (aka Tui), and if you can please make sure to always cuddle with me like you do now:o)

Here are a few pictures of Tui on his FINAL DAY in the NICU!!!

Today's Goal: GO HOME!!!! YAY

Grandma's blankey SOO much softer than the NICU blankets:)


you can barely see him under all of that blanket:)

mom and dad cant wait to get you HOME!

Monday, May 7, 2012

Tallin is making progress, let the countdown begin!!


This week has been great for Tallin! After struggling to keep his oxygen levels up for over a week his little body has finally matured enough to figure things out:o) His monitors don't beep NEARLY as much as they used to and on average he only has a couple dips in oxygen a day, (which he has been able to "self recover" from every time.) He has been able to keep his temperature really well over the last few days so they took him out of the incubator and got him his very own BIG BOY CRIB!! He eats and gains weight just like a "TRUE HARDING".. He is now up to 5lbs 7oz and he looks like a different baby to me..

Kaj was able to sneak away from the house earlier this week and got to come up and give Tui his VERY 1st BATH, (yep you heard me 1st bath and he's almost a month old. They sure aren't in a hurry to get things done around here:)....  I LOVE seeing Kaj bathe our kids when they are newborns. He is soo big in comparison and yet he is so gentle with them.  (Even the nurses commented on how "big/musley" he is.. HAHA..) Tallin of course loved the bath, I personally think he was just loving that quality time with his dad.

SO the word discharge was finally brought up and I think that the lucky day will be Thurs!! He will have to be on oxygen when he goes home and he will need a little extra attention  for the first month or so.. *especially when he eats and sleeps, I am pretty much terrified of this so I dont think I will be sleeping EVER!! (or at least not until I know for sure he has grown out of all of the apnea and other complications caused from him being a premie).. We only have a few other tests that need to be done: hearing, eyes, carseat, a few shots, and I have to spend 2 full days/nights with him to learn his oxygen machines and make sure I'm comftorable with them before leaving the hospital, and THEN we should be ready to go.. (of course as long as Tallin continues to eat his "daily minimums" and "gain weight")....... I am trying not to get TOO excited just in case something doesn't work out, but we are SOOO READY TO GO HOME!!! ***All in All he is doing great and this has been a great week for both of us:O)

Tui in his New Crib!! :O)

dads hand is bigger than Tui's head!

Tui didnt cry but he sure did go stiff as a board when we put him in the water.

soo sweet!

Thursday, May 3, 2012

Rykers Soccer game


Wed night means GAME NIGHT for Ryker. This week my mom had a class to go to and Kaj's mom left yesterday so I absolutely had to be at the game to help Kaj with the kids. (I'm glad that I felt like I had to be there. Usually if Tallin is struggling that day I just stay at the hospital, and wouldn't you know Tallin had 2 REALLY bad "EVENTS" right before I was supposed to be leaving but I didn't let that stop me yesterday)

Ryker LOVES game days, he is on a team with lots of neighbors so it really is just like 1 big play date for him:)  Ryker loves to "slide kick" these days so he spends alot of time on the ground but as long as he's having fun it doesn't really seem to bother anyone... (Last night was also picture night, I'm so glad that our league doesn't "over do" it with pictures. They had the kids in and out in like 10 min!! WOOO HOOO best picture experience ever.)

Things are a little bit different on the sidelines for Kaj and I. Briyler is really upset that he cant be in the game playing soccer with Ryker and all of "his" friends as he would say it. It took alot of "redirecting" on mine and dads part but he finally was happy with just playing on the sidelines.

 Dugi doesn't like boundaries!!! Trying to keep him off of the field was pretty much impossible, and of course the only reason he wanted to go out there is because that was the one place we told him he couldn't go:) gotta love 2 yr olds!

and Kynlie just played on the blanket pretty much the entire game. She had a couple moments where she wanted to be held but Kaj gave her a few snacks and she seemed to be happy with that.

Bri loves to push the stroller

This is Dugi's mood lately!! and his favorite words are "STOP IT"

action shot!! haha

He wanted to play in the game soo bad:(

Mom, why do you keep hugging me!

I'm just too cute to be mad at mom:)

Ryker Loves game nights

the only time pipa actually got held

last picture I PROMISE DUDE:)

why must you take soo many pictures mom!

It was soo nice to have all of the kids AND Kaj and I TOGETHER! We definitely have our work cut out for us for the next couple of years but we wouldn't have it any other way!

Tuesday, May 1, 2012

Tallin's weekly update!


This week has been REALLY rough! Tallin seems to be getting further and further away from being able to come home and the stress from everything going on in the last few weeks is really starting to take a tole on me. I have had more meltdowns then I can count and I spend hours upon hours trying to figure out what lesson I am supposed to be learning in the midst of all of these trials.
 This week Tallin went from being on "room air", needing about 21% oxygen, about a 1/4 liter of flow in his nasal cannula, and 4 bottle feedings a day: TO:   having really bad reflex, being back in an incubator, on about 30-35% and at really bad times 45% oxygen, 1 liter of flow and not being able to take any feedings by mouth. When little Tallins breathing apnea first started and they put him on oxygen he went from having 2-3 "events" in a 24 hour period to now having upwards of 11-12 "events" in a 24 hour period. He is no longer "self recovering" from his events and he now needs either extra oxygen or stimulating from a nurse to come out of the events. There has been multiple times this week when I have been holding Tallin for feedings and he would just STOP BREATHING. His little body slowly goes limp and then his lips and eyes start to turn blue. I can honestly say I have never felt SOO SCARED AND HELPLESS, as his mother I want soo badly to just be able to fix everything and make him healthy but during the "really bad events" and when me trying to stimulate doesn't help all I can do is watch and pray that the nurses and doctors can give him the care he needs to make it through.
 There are a few positive things he has been able to accomplish. Tallin is 5lbs today (WOOP WOOOP), he loves to suck on a Binky and he has been able to keep his stools consistent. He is awake for little bits of time during the day and its so funny to see his little facial expressions. He is a pretty mellow baby (I'm really hoping that doesn't change when we get home) and he loves to be swaddled and held. He already has his own little personality and I have loved every minute I have been able to spend with him already. I feel like him and I already have a pretty special relationship, we have a bond that no one else has the opportunity to have with him yet.
 Right now life for us is a little crazy and very emotional, but I am very grateful that our little Tallin is such a fighter. I know that Heavenly Father has a plan for him and his time on this earth has just begun. Little Tallin has such a sweet little spirit and I cant wait for the kids to finally be able to see him, and as crazy as it sounds I cant wait until we can all be home together and our lives can get back to "OUR CRAZY NORMAL".

Oh and just in case any of you were wondering, grandpa has FINALLY come up with little Tallin's nickname.. its Tui, I actually don't mind that nickname and lately Iv been noticing that i call him that the majority of the time. The nurses think I'm crazy but  I kinda think it fits him:)

Dad and Tui

the closest thing to a smile I've been able to catch on camera:)

such a chill baby:)

this was right after he was born:)

this is a head box, poor little Tallin is such a mellow kid.