Tuesday, January 27, 2009

I might have OCD.....

I will be the first to admit that I have been a little neurotic when it comes to the new baby in our house.

When the children come home from school they must de-robe at the front door. There is a new set of clothes waiting for them when they walk in. They must go directly into the bathroom and scrub down their hands up to their elbows, in the sink while repeating the ABC's at least two times. (Think of all the germs they gather in one school day, YUCK!!!!!!) Then they are allowed to come into the rest of the house and maybe, just maybe, if they are lucky I will let them sneak at peak at their new brother snoozing away in his swing or in his bed, both in his bedroom with the door shut to the outside world. If I could I would have Kale cut a hole out of his bedroom door and install 5" thick glass, for interested outside onlookers. That way no germs could possible pass through, right? They could just peak in the window at him like they did while he was in NICU.

This is how he spends most of his day. In his swing or in his bed propped up on his boppy.

Kale and I decided that only we would hold him when we first brought him home from the hospital. That way there would be no discrimination. This has been really difficult to explain to all those loving friends and neighbors who want to come and love on him. Oops- Nope- Did you wash your hands while repeating the ABC's twice, did you shower before you came over, are those clothes clean, do you have a cough, a runny nose, have you been sneezing, have you been around anyone that has been sick in the last 24-72 hours? If you answer all of the above questions correctly I guess you can come in and LOOK at him!!! I know I am completely NUTS, but I can't seem to relax about it. I should feel better since I am paying something like $2,000.00 a month for antibody shots to protect him from RSV, but what if we are the 1% that contract some mild form of RSV, not to mention all the other viruses and germs out there?

Can you say OCD, my family is making so much fun of me. My Dad goes to pick him up and I say "Dad have you washed your hands" and my sisters chime in, "and you have to sing the ABC's". So he groans "Oh brother" and goes to the sink to wash his hands for all of 10 seconds and I say "Dad you seriously have to wash them for longer than that". So he tries again. After being passed off on his hand washing he promptly goes and gets a paper towel and BLOWS HIS NOSE!!!!!! Seriously Dad you have to start again. Everybody is dying at this point, but I stick to my guns. Maybe we should stay with the original plan of only Kale and I a holding him until he is 3 since he seems to be the only one who has my back here.

You should see my children's hands, they are all raw and bleeding from the 20 to 30 scrubbings they get each day. But, they know there is no getting into the house without a proper hand washing and by now they have pretty much given up on getting anywhere near the baby. They have however been able to kiss the top of his head or bottom of his feet.

I think it is so bad because when Addi was 1 month old, I couldn't resist Taeber always wanting to kiss and love his little sister. I didn't want him to not be able to bond with her, and he usually gets what he wants by looking at me with his big blue eyes. So, despite his cold like symptoms, I let him love on her and she came down with RSV and spent 10 days in the hospital. That is not going to happen this time. If we have to spend anymore time in the hospital you may as well admit me to the psychiatric ward. So, if they resent Daxon or me they are just going to have to get over it.

However, against everything I believe in, this past week after Kai had a particularly bad day at school, (he had to go to the school nurse to get some cream for his dry, cracking, bleeding knuckles, going to the school nurse is one of his favorite past times), I caved and let them all take turns holding the baby. They were so excited, it was like I had just told them we were going to Disneyland. But, they were not going to enjoy this once in a lifetime priveledge before they had showered and changed their clothes. (I am not kidding about that.) They all jumped in happily.

I had to take pictures just to prove to Kale that it really happened so here they are...................

After they were done I worried for about 24 hours that he may have contracted some horrific disease......
So far, So good!

Friday, January 9, 2009

My Crazy 2008

OK, I know you are thinking that I haven't posted here since April of 2008 which is shortly after I started my blog. So I will be surprised if anyone is even around to check this. I think everyone is sick and tired of the same old page "Never Say Never" when they go to check out my blog.

Well shortly after I wrote that my life kind of turned upside down. After many requests to "update my blog" this is going to be my best attempt at rehashing all the events that have happened to our family in the last 9 months. I will try to be positive but also know that these were the hardest 9 months of my life.! (Many gory details will be left out.)

The first of MAY Kale and I spent a week in beautiful Hawaii with his brother Kimball and sister in law Lisa. We try to go on a vacation every May after a long and grueling tax season, in which we haven't seen each other for 2 1/2 months.

We had such a wonderful time and dot....dot....dot.....
(No wonder 3 of our 4 kids were due in January)

This may have been the last photo taken of me in 2008. As soon as we got home from Hawaii I pretty much figured I was PREGNANT. Having my head in the toilet more than half of the day is a sure sign. For me being pregnant is kind of like a death sentence. I always hope and pray the sickness with skip me this time but that never seems to be the case. This time was no different, but with three kids and not living by any family it was definitely more challenging.

For those of you who don't know I have a condition called Hyperemesis Gravidarum or HG. HG is a debilitating and potentially life-threatening pregnancy disease marked by rapid weight loss, malnutrition, and dehydration due to unrelenting nausea and/or vomiting with potential adverse consequences for the newborn(s). For more information or if you have someone you know or love who may also suffer from this condition you can go to www. hyperemesis.org .

When I get to this place I basically go on survival mode. I am not a very fun person to be around. I can only do one thing and that is make it through each moment and that takes all I have. I don't like to talk or be around anyone really because I just don't even feel like I can expend the energy. I literally feel like a different person, someone who doesn't care to live or die. Needless to say Kale has had to spend a lot of time with his wife in this place, and I don't think ANYONE could handle it as well as he does, and he does it without complaining. Although it is half his fault I am in this predicament to begin with, right?? People always ask why would we do this again? It is not that I forget what happens to me or that I truly feel it won't happen again. I always wanted 4 children and I wasn't going to let this thing beat me. 9 months seems like such a short time in the "Grand Scheme of things" to suffer for each child, when you get to have them with you forever. It is because of the knowledge I have that families can be together forever!!!

By early June things started to spiral out of my control. Luckily the kids were just out of school and we headed up to St. George for a family vacation. I drove the kids up and Kale stayed home to work. By the time the week was at its end I was also at my wits end with throwing up and feeling completely miserable. I didn't think I had the strength to drive myself home so Kale had to come and pick me up and the kids went home to Provo to spend some quality time with their Grandparents, Aunts, Uncles and cousins. We didn't realize at the time it would be 2 months worth of time. They spent the majority of the summer being orphans but being loved by everyone and loving every second of it.

Taeber spent his 6th birthday with his grandparents and cousins while his Mom spent her time in the hospital wishing she was in a 9 month coma, and his Dad spending a lot of time between work and the hospital, eating way too much hospital food.

I got my first PICC line placed in my arm and got started on a myriad of medications just to help me survive each moment. After 10 days I was finally released from the hospital, sporting my new permanent IV line in my arm attached to a backpack of medication, to the waiting arms of home health care. This is where they taught Kale to be my nurse and doctor. Changing my medicine every night through 2 different pumps, injecting 8 different medications. He did this faithfully every night for the rest of the pregnancy.
When July came we thought it would be a swell idea to go with all my medical contraptions to visit our children who hadn't even skipped a beat and didn't even miss us at all. OK maybe they missed the dog, but they were having so much fun with their cousins. Kale and I got in the car and drove to Utah. After spending the fourth of July with family I thought it would be nice to stay in Utah at my moms with my kids in the cooler air. My Mom is about the only other person on planet earth that gets me during this time and that's because she'd survived it 5 times with each of her pregnancies. My sisters were also there to let me just hang out and were totally understanding of how difficult it is for me. No matter how bad the day (or how bad I looked or smelled) they kept me company and did what they could to make me as comfortable as possible. I really could not have done this with out them stepping in and just taking over. Families are the best!!!!!! They have done WAY more than their share.
Addilyn still thinks that Stefanie might be her Mom, and the Kai and Taeber miss hanging out with their Grandpa!!! They would just as soon move in with them.

Kale had to go home to go back to work so he taught my mom how to change all my medications and we worked out a plan with home health care to have my blood drawn once a week at the hospital ( I was on so many meds we had to check many different levels once a week). I didn't realize I wouldn't even make it a couple of days without heading right back to my least favorite place in the whole world, the hospital. I was still so sick but now fevering, chilling, shaking and generally weak and not able to do ANYTHING for myself. My white blood cell count was high and platelet count was low. Time to head back in to the hospital. My most patient mom packed up all my medical parifinalia and drove me back to Las Vegas to my wonderful husband and doctor, both of which have been so patient with me. They admitted me right away and pulled out my PICC line and found I had a very rare bacterial infection throughout my body. Now my mom is a saint and sat with me in the hospital for 10 days. I don't even think I spoke more than 10 words to her the whole time I was in the hospital. I really just wanted to die!! But there she sat fielding all my texts and calls and keeping everyone updated and keeping me from ripping out all my lines and tieing them around any nurse that walked in. Every time I opened my eyes she sat there smiling telling me I could do this!!! I was so weak I couldn't even get up to brush my teeth or shower. She had to do it all for me. Even helping me walk down the hall like a 90 year old grandma with a walker and attached to about 10 IV's. The highlight of that week was when my mom crawled in my hospital bed with me and we watched Dream Girls. A new PICC line was placed in my other arm after 10 days and I was again released to go home to home health care. I barely made it out of there alive. Phew!!!!! I really don't like hospitals anymore and especially not this one.

(Now if I had a picture of me at this time I would post it here but I didn't let anyone with a camera near me. It would have been kind of funny looking back now to see but at the time I really wasn't in the mood.)

August came and so did all the side effects from the high doses of steroids that I was living on. I was 14 weeks pregnant and looked like I was 9 months. I was so swollen I was unrecognizable to most people. My face was so round I couldn't even smile, not that I felt like smiling. I had gotten so many stretch marks on my abdomen from getting big so fast. I had a horrible rash all over my whole body, a camel hump at the base of my neck, nasty hair all over my body in all the wrong places. All I could do all day was lay in bed because I was too weak to even sit up but because of the steroids, but I couldn't even relax enough to even sleep without sleeping pills. I had to check my blood sugar levels 4 times a day and adjust my insulin levels. This was all due to the steroids that we were using for the side effect of having an increase in my appetite. Which I must admit that it did that too. For the first time being pregnant in all my life I was able to eat and keep most of the food down. The steroids were a blessing and a curse and have caused me so many problems I can't even name them all, but they kept me from having to be on total nutrition through my PICC line and kept me out of the hospital for 4 more months.

Would I go the steroid route again you ask, I hope to never ever have to make that decision, but I don't think so. It completely messed up my body and I am afraid that I am going to have lasting effects. Usually when I am done being pregnant I am instantly cured, but this time I am afraid I am going to have lasting side effects.

The kids finally came home the end of August to start back to school and I had no idea how I was going to make it through with 3 children at home because I was not really able to take care of myself let alone get them where they needed to be each day and do all the stuff that comes with school and sports and everything else and it wasn't easy. Fortunately we have the most wonderful friends and neighbors here in Vegas who made an impossible situation bearable. They mostly took a huge burden off of Kale's shoulders. They basically just took over and brought in meals 3 days a week, took my children to and from school and all of their activities, kept Addi all day for play dates, cleaned my house numerous times, washed my hair, gave me pedicures and did all of our grocery shopping. I know that Las Vegas is supposed to be "Sin City" but to us it was "Service City". We have made the most wonderful friends, it is true that you really grow to love those you serve and those that serve you. When you live far away from your family and the people around you step up like this, it was truly amazing. A miracle for our family that I will never forget or be able to repay anyone for, except by passing it on. I hope to never be the service project again, but instead be able to organize the service project. Soon that day is coming soon!!!!

September was rather uneventful. Me in bed all day, friends bringing in meals and taking my kids everywhere they needed to go. Kale still being my "at home personal nurse" every night, home health care coming in once a week for a visit. Spending loads of time at the Dr.s office and everyday my side effects from the medications getting worse and worse. Trying to have a positive mental attitude was starting to wear on me at this point and I was just trying to take it day by day, moment by moment.

October seemed to be more of the same. My side effects were so bad at this point that we decided to stop taking the steroids and deal with the lack of appetite, nausea, and vomiting instead. I only had 3 more months or so left, I thought. My blood pressure went from being extremely low to creeping up higher and higher with each appointment. The swelling in my legs and feet was so bad now I couldn't walk on them, not that I was really walking anywhere anyways. My whole body felt like it was going to burst. Halloween couldn't come and go fast enough for me. I knew once it was over Thanksgiving would soon follow and then Christmas and then I would be finished being pregnant FOREVER!!!!! The kids had a fun Halloween despite my outlook and they all looked adorable or scary, one of the two.
Who knew that by the end of November my nightmare would end and a new journey would begin. My blood pressure kept getting higher and higher and the swelling was now in my hands and face. Difficult to tell if it was from the steroids or blood pressure, so we all waited. We were planning to try to go to St. George to meet my family for Thanksgiving even for the day, but knew we had to keep and open mind. By this point they were checking my kidney function and keeping close tabs on my blood pressure. I had a Dr's appt. the day before Thanksgiving which we figured the Dr. would say OK to go to St. George but be on bed rest or something like that. We were totally unprepared for the news we would receive. The little man growing inside was not reacting well to the stress my body was putting on him, his little heart was having to pump way to hard and was starting to get enlarged from all the stress, the fluid around him was too low and he was measuring too small. My blood pressure was now way too high and they were going to admit me to the hospital again right away. UUUURRRRRGGGGGGHHHH!!!!!!! Still not fully prepared for the road ahead. I thought we would be in the hospital a month and then maybe have the baby a month early. My family came to the rescue once again and instead of spending Thanksgiving in St. George they drove to Vegas dropped my mom off once again to sit with me in the hospital, and picked my kids up to go back to Provo to be with their cousins for Thanksgiving. Before they left I requested a blessing from Kale and my Dad.

I could tell when my Dad walked in my hospital room to give me a blessing that something else was wrong. No one wanted to tell me and upset me further, but I already knew. My Grandma Norton whom I adore and admire more than anyone in the world was passing away and wasn't going to make it more than a few more hours. We all knew that this was going to happen for a while and I had a feeling that it was all going to happen at once, but I always said that I would go to her funeral NO MATTER WHAT!!!! Well guess what they don't let you out of the hospital for things like that when your life and the life growing inside of you is also in danger from pregnancy induced hypertension. I had tried not to let myself think this totally through yet because when I got emotional it would cause my blood pressure to get even higher so I just tried to act like it wasn't happening yet. I could only try and think of the good times all of us had had with her and the good times yet to come. Once again I am so thankful to know that families are forever!!

I love my Grandma for many reasons but here are a few that stand out to me.....

*Fourth of July BBQ and fireworks at her house every year (this past fourth of July was this last time that I got to see my Grandma.)

*Christmas day, opening matching PJ's with all of the cousins my age, making up a play of some sort with all of the dress ups and making the grown ups watch at the end of the night.

*Riding in the back of the sweet brown El Camino

*Playing in her play room, playing Huskerdo

*The smell of her house after Sunday dinner

*The smell of her skin after she took a trip to the Spa

*Her trying to always give Kale a big SMOOCH on the lips

*Going to sleep at her house while I was in college, (no one knew where to find me and I could sleep at her house for days.)

*Being able to choose any kind of cereal ever made out of her cupboard after I woke up from my slumber

*Always remembering everyone's birthday with a card and a dollar



Here is Grandma Great is with 3 of my 4 children, and I am certain that she got to meet and snuggle the 4th for 2 days before she sent him down to me.

I was admitted to the hospital on Wednesday, November 26. For Thanksgiving the next day Kale and Mom had a wonderful cafeteria Thanksgiving meal (more hosptial cafeteria food yumm) and on Friday Grandma passed away. What a crazy couple of days. Then I had a few more tests and found I had gained 13 lbs in 2 days and my Dr. said that the baby had just gotten the eviction notice. What, I am thinking, he is still 8 weeks early??!! I had fought hard for this baby and I know what happens to babys in Newborn ICU. I know what they look like. I've done many an ultrasound on them and I had all the visions of what could happen. To say that I was a bit anxious and frankly scared to death is an understatement. I wouldn't let Kale and Mom leave my side. At this point my blood pressure was so high I was seeing stars and had the worst migraine of my whole life. I was so sick I really thought I would die. I didn't think I even had enough strength to push out this baby. I begged for them to just get him out, and they begged for me to just try to push him out. My mom on one side with cold wash rags on my face and Kale on the other side combing my hair and my dad in the corner horrified at all the events taking place. Labor was fast and no one believed it could really be time until my nurse checked me and I was complete and had to sit with my legs together until my Dr. and NICU team could come in, raising my blood pressure even higher!!!!! I kept telling them I would go fast once they started me but no one was listening.

Finally at 4:40 on December 1st, 2008

a perfect little boy came into this world

and stole my heart.


3 LBS 6 OZ

16 1/2 " LONG

Weighing a mere 3 lbs 6 oz's and crying out loud. ( I guess the 4 months of steroids and 2 steriod shots were worth something. ) I got to see him for a quick second before they whisked him off to NICU. It was that moment that all the events of the past 7 months seemed unimportant and all that mattered was my son. I now saw a light at the end of the tunnel I had visions of having a normal family life again and getting my life back. It was 2 hours later when all of that changed again. The baby was doing well Kale and my Dad had been with him in the NICU. He had been on room air from the beginning (which was amazing for a 32 weeker) and was doing everything they could expect him to do. They came back in the room to check on me and my Mom and it was just in time for the circus to begin. I started to hemorrage from the medication they had put me on the bring my blood pressure down so that I didn't have a stroke. I was bleeding and bleeding ALOT!!!! Nurse were scrambling in and out and after about an hour I ended up in the operation room having a possible hysterectomy (which ended up being just a D&C because they got the bleeding under control). During this time I really felt like I may not make it through this, I thought again that I was going to die!!!!! Once again Kale and my parents were there to pull me through.

The Dr. came in the next morning and I was so weak I couldn't even lift my head, he told me I had lost half the blood in my body and needed to have a blood transfusion. I remember signing that consent paper when we had checked into the hospital but never figured it would apply to me. After getting 4 units of blood I started to feel much better. I actually made it to NICU to see my perfect son hanging out in his isolette. He was smaller than expected but the Dr.s kept saying he was acting very mature for his age (He gets that from his Dad and his Grandma Great). I know that Grandma Great had a hand in all of this. She has been such a wonderful example to all of my other kids and been such a big part of their lives, I know she wanted to meet him and sing him "Rock a bye" before she sent him down to be with us. She got to spend 2 perfect days with him in heaven before she let him come down to our family. If she would have lived even a couple more days she never would have met him, and it is so special to me that she knows each of my 4 children. She made him strong enough to come to us and her presence helped me through a rough couple of days. I am sad that I didn't make it to her funeral but happy that she got to spend quality time with Daxon. I again am so thankful to know that families are forever and that she will be watching over us from above and that her and little Dax have a special relationship. That makes me smile!!!!! She has done so much for me and everyone else during her life and even in her death continues to give.
Daxon has been a fighter from the beginning and continues to amaze us all with what this teeny tiny body can do. He spent 4 weeks in NICU basically learning to eat and grow. Here are a few photos of him doing his thing.

He was a little jaundice for the first few days so he had to hang out under the lights in his cool shadesHere is a picture to show how small his little head was, literally the size of a softball

Daxon loved to pull out his NG tube in his nose, he did this at least once a day until the nurses finally smartened up and put socks on his hands

Here were his first visitors in his first couple of days......

Grandpa Norton

Grandma Norton

Aunt Stefanie

Dad, Kai and Taeber

Daxon did so well in his first 2 weeks that they decieded to transfer him to another hosptial that was a step down level 2 nursery. He didn't need level 3 care anymore. This hospital is closer to our house and it is a much smaller intimate setting. He was able to have the same nurses everyday and night which was really nice. They loved Daxon so much.

This is when they transfered Dax.

He got to go in his first (hopefully last) ambulance ride.

We spent several weekls going back and forth each day multiple times between the hospital and home and again our families came to the rescue over Christmas break to help with the other kids. We watched Daxon progress from eating 10cc's every three hours through a tube placed in his nose down into his stomach, to slurping down an ounce and half out of a bottle. We got to know and love the nurses who were watching over and loving our son 24 hours a day and after spending that amount of time in the NICU we were so thankful for our "wimpy white boy" of a son who just needed to eat and grow and didn't have to deal with any of the devastating complications that can come with premature birth.

His goals were to to do three things to be able to come home, 1) get out of his isolette and be able to keep up his own body temperature, 2)be able to take all of his feedings through a bottle, 3)be steadily gaining weight. This seems realitivley simple for us but for a preemie these are huge milestones. One off sets the other. Do you know how much energy it takes to keep up you own body temperature, so he could come out of his isolette but then he would start to loose weight just from the work of keeping up his temperature. Same with his feedings it takes as much energy to drink his bottle as the calories that he was gaining so in order to drink a bottle he would lose weight. (Oh if I could only be a preemie!) We started out only being able to give him one feeding a day and then slowly worked up from there. The nurses kept telling us that one day it would all click and all three things will come together at once. That is excatly what happened.

In the midst of all the chaos was Christmas. We spent Christmas Eve at the hospital being torn between being with our kids at home or our baby in the hospital. That afternoon Daxon pulled out his NG tube for the last time, and spent his last day in his "little condo" (his isolette) The nurses knew we were bringing in the older kids to see him so the left out the tube so we could take some cute pictures of him tubeless and in a "big boy bed". When we showed up with the kids we were so excited to see him laying there looking so bi. We did a little sweet talking and were able to bring the kids in for a family picture and to dress Dax up and let the kids see him, in his Chirstmas stocking, which he fit inside perfectly. The nurses decieded that night not to put the NG back in and to let him try to do all his feeding through a bottle.

On Christmas morning they told us he had taken all his feeding through the night and that he was doing so well he was getting ready to come home. 1 month still until his due date and 1 month before the expected him to come home. What a wonderful Christmas present .Again, Grandma Great is watching out for him. We spent the next couple of days getting ready for his homecoming and anticipating many sleepless nights. But being tired is nothing compared to being pregnant!!!!!
Here we are on the way home from the hospital .

It has been a rough 7 months for all parties involved, but we made it through!! And look what I have to show for it. I finally realized my dream of having 4 children that are all healthy and happy. I couldn't be prouder or happier!!!

This is why I did it again!!!

A wee bit of heaven drifted down from above-
A handful of happiness, a heartful of love.
The mystery of life, so sacred and sweet-
The giver of joy so deep and complete.
Precious and priceless, so loveable too-
The worlds timeless miracle, baby is YOU!!

I know he looks a little Yoda-esk in this picture but his Grandma Great also gave him the Norton ears. ****And I promise if I have anything to do with it,

it will never happen again! ;****

This never could have happened without the unconditional love and support of so many people.

I am so thankful for a husband who is so kind, patient and understanding to my needs. I am thankful that he is able to pick up the slack where I leave off. He has always stood by my side and given me everything I have ever needed or wanted. He makes me calm. During all my difficult and stressful times, he is NEVER stressed (or never shows he is stressed) and stays right by me holding my hand calming me down. Just having him around me totally makes me feel that everything will be OK. 10 years ago when I decieded to marry Kale I never knew that I would have hyperemesis and I could never have imagined how hard it would be. But, we have made it through together and I am the LUCKIEST girl alive to be married to him. Here is to Eternity.

My family has been so amazing!!! They really have helped us out of so many binds. As soon as we think we are finally out of the woods something else pops up and my Mom and Dad and Sisters are in the car, coming to help. It is so wonderful to have family support you unconditionally. My Sisters are the best and I couldn't think of anyone I would rather have my kids spend the better part of 7 months with. Thank you, Thank you, Thank you from the bottom of my heart. I hope that someday, when you are in need that we can help out you and your family.

Kales family has also been so supportive. His parents are the best helpers you can image. They always show up at the house and help with all the odds and ends, repainting and redecorating. They have transformed all of my nurseries into masterpieces. They love to spend time with the kids and they also took there share of watching them over these past 7 months.

Again I am so thankful that FAMILIES ARE FOREVER!!!

Thank you so much to all of our wonderful friends, and to all of you how have become our friends. Your service to our family has been immeasurable. Your phone calls, emails, letters, dinners and so many other things have not gone unnoticed and we appreciate you all. I hope to be able to serve my friends in this fashion.

He Never Said It Would Be Easy,

He Only Said It Would Be Worth it.