She calls me "MaMa"

There are always those little things as a parent that just hit you right to your core. They seem to come out of nowhere, but you remember them long after they are gone and long after the newness wears off. Sometimes the moments make you want to jump up and run around the room, screaming with joy, other times you are so rocked, all you can do is cry with gratitude and love.

In the past 48 hours, I have had a few of those experiences, and I would like to share:

Saturday. Saturday was Kotah's 1st birthday. There was a time I truly did not think we would make it to this point. I was so humbled when I awoke that morning. All I could think of was that here was my little baby, growing and developing and progressing, all thanks to God's miraculous power. She has not been doing so hot. It looks as if she may need some ear tubes. However, when that happens, there are a lot of doctors wanting to do small exams and procedures all at the same time while she is under. They really don't like the idea of giving her any more times under anesthesia than is absolutely necessary, so it may turn out much bigger than tubes. And it could be that we are getting close to the peak with her. The more that I research the genetic possible mutations, the more I am sure of and dreading the diagnosis. It makes me all the more grateful for every little instance, every little miracle, every smile, every laugh.
While we were driving to and fro, we listened to Scripture scouts, the episode where Christ comes. Katie started crying at the song where Christ sings. She asked "who is singing? I told her it was Jesus and she started crying and crying all the while saying "These are my happy tears. I feel so happy. When I am so happy, my happy tears come." She is so open to the spirit. I cried along with her. Ty laughed. In a very loving sort of way. Until I tried to reach back and hold Katie's hand while driving as well. The laughs quickly disappeared.

Yesterday I was having a pretty bad day. It was the feeling of the world has come to an end, I am a horrible mother, I hate me kind of day. (no sleep definitely does not help the feelings) Ty was trying to let me get it all out and Katie happened to walk by and hear me say something along the lines of how I felt that I was failing as a mom. She burst into tears and ran into my arms and said "oh mommy, don't say that! You are my best mommy ever. You do everything for me. You cook and clean and play with me. Please don't cry mommy! I love you!" So of course, I cried harder. But as she snuggled with me and we wiped each others tears away, I got the strength I needed to get past that hard moment, all in my daughters love for me.

Today while at work, I was feeding some baby puffs to Kotah and some other toddlers when she looked at me and said "Mama!" I was shocked speechless. Then she proceeded to walk 5 steps from the couch on her own to me while saying "Mama, Mama." For a girl that has always called me DaDa this was amazing. I squealed. I hugged her and begged her to say it again. So she obliged. What a fun day it has been. Just now, as she got up for a night feeding, she tiredly called out "Mama?" The feeling in my heart when I hear her call for me is almost indescribable. It hits something deep. Something in my very nature. Maybe it is the same nature that drives my little Kotah to rock her baby doll back and forth and pat her back. The same depth as when Katie runs to Kotah when she cries. Hearing my baby call for me by the most precious and prized name awakens such a love, such a pride. The fact that she is here with us, despite all odds and that she is able to speak makes it so much more. That she would choose to call for me is more precious than money can buy.

Its moments like these that make me want to try all the more to be the best I can for my daughters. To love them and serve and teach them. They really are my reminders of God and how great and wonderful He is to me. I think of how much I love these two little handfuls, uh bundles- I meant bundles of joy ;) and then I think that God loves me even more than that, and I feel so overcome. How blessed each of us is to be a child of God!

Third times the charm.

There is an expression "If it was a snake, it would have bit me." There is a snake in my life that has been chomping on my nose for the past month and a half. It is the fact that I have known that going back to work was not going to work out. But I kept at it, because I believed it was the right decision. I was getting stir crazy (let's be honest, without a car, there is not much you can do in under 20 weather) and we needed the money (I thought) and the girls needed some socialization (because what 3 year olds day is complete without a few good fights and arguments over toys?) .

However, the snake took a good latch and hung on. I started to notice it when Katie became a little more emotional. I noticed it when I had to take Kotah to night clinics because I couldn't leave work. It was there when I was so spent that we had freezer meals a week straight and poor Ty had to pick something up from the store. And when my girls sat and cried in front of me, but I couldn't pick them up because I was wrist deep in some other kids poop out. When Katie started to behave less and less like the angel I know she is and more and more like the.... well, the bratty, attention starved Day care kids. 

I knew at the beginning of the month. But I kept putting off telling my boss. At first it was because her dad had died and I knew she needed a break. Then it was another family trial and I didn't want to burden her anymore. But it all honesty, it was because I was greedy. After hardly even surviving, I was enjoying having a little bit of leeway in finances. Enough to enjoy going out to eat, probably more than we should have. Kotah's social security started coming so the medical financial burden was gone. We could actually buy our own food. However that was do largely to the fact that because of the social security check, food stamps was discontinued. But I was, in my mind, living the high life! More than just the bare necessities. And meat! Oh heavenly meat! Not having to worry about a bill or buying a package of diapers. 

But this new "lifestyle" came with a price tag. The once happy and relaxed atmosphere that we tried to live by in our house was gone. Replaced by stress and anxiety. Packing everyday, getting home a night with barely any energy left to microwave a meal for Katie. The laundry and dishes stacked up. I haven't been able to bake in who knows how long. And if you know me, you know that I LOVE to make cookies and homemade bread and cookies and well, yeah, cookies. The toyroom was collecting dust! And the stress of getting Kotah into see a doctor was unreal. It was either night clinics, or the urgent care, or the er.
Today was the breaking point. The point where I realized that there was never going to be a good day to tell my boss. The point where I realized that this had to end. It started when three of the toddlers had pink eye. I quarantined Katie and Kotah to a separate room. No way in heck. But this is what life is a daycare. Don't really call it pink eye. Or rsv. Or strep. "It's just a cold." That is what the parents say, so they can still leave their kid and go to work. That is what the providers say so that the "hyper-sensitive" parents don't freak out and pull out their kids, thus pulling down profits. But with how medically complex Kotah is, I was protective. And then I thought, what if she gets something here that she CAN'T handle? No quart of ice cream or lunch at Golden Corral is worth that. So today I gave my notice (for the third time) to my boss. I love kids. But I am not good at multiple personalities. I can't be a mom and a day care provider. I promised to help train the new person and to come in occasionally, but I can't be the go-to person. I am the go-to for my children.
As I look at "tightening the belt" once more, I am not really afraid. We made it before. Ty is almost done with school. And heck, I am looking forward to getting cabin fever. I may just have to dust off the craft boxes and games. Or maybe we'll bundle up and go on a walk to the corner and then run back for breathing treatments and oxygen therapy to combat the air quality. Whatever we do, having two open arms to hold my girls in is the most important. I don't get a re-do on this time I have with them now. 

Another update

Ah the past two weeks have flown by, yet felt like a lifetime. In all I think we were at the er 2x and the doctors office 5x. Kotah had her nose suctioned so many times I stopped counting. Her o2 sats were low and even with oxygen bumped up triple during the day, it still took a bit for her to get better. On Saturday we were in the er again for monitoring because her resting heart rate was at 190. The last time this happened she had those 4 mini heart attacks. The doc said that we are doing everything right. Even though it seems so hard and hopeless, we are doing everything right to keep her alive and that she wouldn't be alive if we did things differently. As hard as that was to hear, it also helps. It helps to know we are doing something right.

There is a doctor out in Chicago that basically wrote the book on the gene mutation that has been discussed before. After some emails with the nurses in the clinic, we are looking at two series of blood testing. We are not sure if it will be covered by insurance and it costs a lot. Thank goodness for tax season!

Now for the fun cutesier stuff:

Katie is loving sunbeams! I think her favorite part is singing time. She comes home singing the songs and asking me to sing with her. She is catching on to sooo much.
She loves being a big sister and likes to help Kotah walk around the room. I.E. holding her under the arms and walking with her.
She got a bike for Christmas and rides it around and around and around the kitchen table. We have taken her outside with it once. She did great!
She loves to pretend that she is fluent in Spanish. We introduce new words to her a bit at a time but I am already thinking ahead to Kindergarten and hoping to find a program that does Spanish immersion.
The other day she stuck a MnM up her nose (I have no clue why) and after a few minutes of calming and nose blowing, it melted enough that it came out. Needless to say, she has not tried that since.
She loves to "surprise" me by cleaning up messes. But she still wants help. So I close my eyes and help her clean up and then get to be surprised when I open them and the room is clean :)

Kotah is almost walking. She keeps trying to stand up on her own and will walk from Ty to me.
 She tries to mimic what we say and sometimes it is so close I am caught off guard. She can say and understand : HI, Please, Thank you, This?, That?, UP!!!, Ada -Daddy for Ty, Dada- what she calls me, Eat, and Boobs. On Sunday we were sitting in a combined meeting and she started pounding on me yelling "Dada, BOOBS!"
 She is a tough little chick and will blow over anything or anyone that gets in her way. Except coming down stairs. She just sits and the top and screams. Three small elongated stairs. We work on going down them everyday. She can go down 7 steep short stairs, but not 3.
She had to have two antibiotic shots today to try to get rid of an ear infection that the oral antibiotics are not touching. They opted to do this as the only other medicine to give her was something she is allergic to. After 5 minutes, her legs had swollen at least 2 inches and had a rash and hives. Of course it would. Sigh. Such a trouper though. She hardly cried.
She is my snuggle bug. She will cling onto me when I pick her up and sometimes she will pat my back. I found her playing with a baby doll the other day, rocking it and patting its back and giving it kisses. So cute!


Our normal has Ty and I pretty worn out. But the precious moments with our girls make it all worth it.

This is a dump post. eta: Trigger

(edited to add trigger to title. this really is a dump post with trigger worries)
This blog will probably be a little more personal than I am used to, but after melting down while driving today I need to just let my feelings out.
I have heard this song before and have been touched, but not ever like the way it got me today. Ty turned to me and said "wow, you really are a mess" as he tenderly wiped the tears from my cheeks so I could keep my hands on the wheel. Notice: I did say melt down, not break down. Melt is when your soul seeps out your eyes. Break is when it comes out your mouth and whole body through various sobs and shakes. Melt-keep driving. Break-pull over! (We have been discussing for the past few weeks how much of an emotional wreck I am right now. A lot of it is due to feeling so overwhelmingly blessed and part of it is due to not really dealing with all my feelings for the past almost 9 months.)
I feel so helpless. And many days, hopeless.
I feel guilty. She is mostly healthy and still here, yet I worry.
Worry. Maybe I should have put that I need to let all my worries out, not so much feelings. I worry a lot. I worry that I'll miss something when she pulls her monitor off and I don't wake her to go through the struggle of putting it back on, but instead just let her sleep. I worry that if I don't watch her constantly she could pass out and not come back cuz I'm not there to help her. I worry that our time with her is numbered. I worry that the high white blood count could mean cancer (thanks a lot stupid internet search) and that will be a whole nother ball game. I worry that the lack of time I spend with Katie will turn her into a sister who hates her younger sibling and takes it out on her.
I was cuddling with Kotah yesterday and had an overwhelming fear of what if I don't get to do this much longer. I try so hard to ignore that fear because it can be so very debilitating, but it is a constant companion when she is struggling. When she is healthy, I almost forget how hard it can be and then when something pops up, it hits hard. I am so scared to even think about, to even admit that one day... can't type it.
I feel stupid for my fears.
I feel so angry when anything wakes up Kotah after getting her to sleep. Even if it's Katie. Especially if it is an outside influence. It is easier to mask my fears with anger and place that anger where it really doesn't belong. Not the healthiest thing and I do try to reroute that thinking pattern, but at least I know its there.
I am overprotective of Kotah. I am trying to curb that one because it will harm her more in the long run then a bump.
I sometimes forget to pray in the moment and put more expectations on the nurses and doctors.
I fear another hospital stay. The new years starts which means filling the insurance quotas up again. I feel very stupid for thinking like that because there is nothing I wouldn't do for her health, but it is a concern. Also, watching her be hooked up to machines and ivs when she has become such an active little girl is so hard.
I kick myself in the butt numerous times with guilt for not speaking up on things from past visits.
I feel like a monster for letting them cath/or try to cath her. I know its a medical procedure and I know it is necessary and I can't really explain to her or get her to pee in a cup, but I feel like a horrible horrible mother.
I feel so out of control. I love control. I like having every thing work the way I think it should. Everything has a place and should be kept in it except for a time allotted for its use. The more crazy things get, the more of a control freak I become. I have a hard time letting things go. I am getting better and I have to remind myself a lot to let it go, but my natural man is a control freak.




I do know that we have been blessed with so many miracles. God has placed, from day one, the right people at the right times in our path to help and uplift us. From something as small as a text when I am feeling down, to a needed monitor being tucked away at a friends house, to rides to appointments, to money to be able to pay off outstanding medical debt, we have been truly and richly blessed.
My testimony has grown. I know that God knows exactly who I am. He is aware of every little instance. He walks with me in every moment, even when I forget to ask for Him. He loves me. He cares about me, about my children, about my fears, about my needs and He supplys. He comforts me through the spirits calming influence. Many days He is so close I can feel his arms around me, holding me up.
This song is how I feel in my darkest moments, but the light so quickly comes. I know that Kotah and me and my family are never left alone.

Kotah and Christmas

Monday we went in to the doctors office. I had called and the receptionist had said there was no openings and that she would leave a message for the doctor. I know that they don't get the messages until the end of the day so we went up to the office after they stopped answering my phone calls. I asked to speak with a nurse and said I would wait as long as it was necessary. Kotah was pretty lethargic and not eating. In fact, I think she may have nursed only two times that day. After a while, one of the nurses (NOT the one we regularly work with) came out and sat and talked with me and monitored Kotah, who took the moment to have her monitor go off a bit (thank you sweetie, nice touch!), and then said to schedule with the doctor for next week and went back to print off all the reports from the er visits and talk to the doctor. She came running out two minutes later as we were getting packed up and was relieved to catch us because the doctor wanted to do more monitoring and see us personally the next day. I LOVE Kotahs doctor. Have I mentioned that before? I do! She is a mom of children close to my girls ages and is very invested in their health.
We were back again the next morning first thing. The doc had already gone over all the notes and as I relayed my concerns, I did not have to explain why, she knew what I was talking about and had the same concerns. She told me that what the er had said "common cold" was not true and that she has a pretty bad virus. One of the worst ones this time of year. And that it seems like her body just can't handle colds like any other child, and that it was a miracle she was doing as good as she was. I credit it to prayers. There are a lot of people praying for her right now. She kept checking her email as we are still waiting on the results of cultures. We discussed cath issues and she put in motion a visit with a specialist to check anatomy and figure out what is wrong there. We talked about other possible needed visits with different specialists and as we were leaving she was already at her computer, busy working on the heart issues.
After listening to my desire for a BBG treatment (thank you Amy because I knew what to ask for!!) which is basically a medical electrical nose sucker outer, the doctor recommended a different approach. They have an in office procedure that is a small tube that they stick down the nose into the throat and suction out that way. She thought it would work better. She also wanted us to try and stay close so that they can do it once a day if they have to to help Kotah. Kotah hated having the tube go down, but once she realized what was happening , she stopped fussing and relaxed and even smiled. After that she seemed to improve a ton. She was able to eat better and I didn't have to use the oxygen for her sats or her heart beat!!!!!
To stay close (and for fun) we stayed at my gparents house and had Christmas there with my mom and siblings. Oh my goodness, I think my girls are the most loved and spoiled girls EVER! We had an unknown Santa visit us last week and drop off what looked like a raid on a toy store. We might not get around to playing with everything for a few months.
What a blessed day! To be with my family and have a beautiful, alive baby is wonderful. There are parents I know from being at Primarys earlier this year that do not have that miracle and instead have their angels watching them from above. I feel blessed with so much love from our Heavenly Father and our Savior, Jesus Christ to give us this gift. My heart has been leaking out of my eyes a lot!
My brother on a mission got to Skype for his Christmas call. What a fun event! Katie loved seeing him. Kotah, eh, she was not too impressed. She was hungry and still isn't feeling 100%. She really needed another treatment today, but when I called around, the instacare people said they can't do it in their office and the er lady I talked to said she would have to be admitted to determine if it really was the problem! AHHH! I am very grateful though to the men and women who work on the days we all have off so that emergencies can be readily addressed. So we are on our way down first thing tomorrow morning. Granted I get off the Internet soon and catch some zzzzs.
Merry Christmas! May you feel the love our Heavenly Father and our Savior have for you individually, though your trials be big or small.

Another round of life

Yesterday was a crazy day. Kotah has had a faster then normal heart beat for about a week and friday night while she was sleeping it was at 190-198. I called the doctors office saturday morning and they said if it didn't go down to take her to the er. We went to the er about a month ago and I was not so willing to just go so instead we took her to the urgent care facility in Layton.

The doctor there said he was not comfortable with her heart rate and was not comfortable treating us there and advised us to go to an er as well. So we went to Lakeview. I was able to drop Katie off with Ty's sister as Ty was at work doing snow removal.

The first thing that they did was to hook her up to monitors and an EKG. The EKG showed heightened heart rate, but the scary part was right after. The monitor started going bonkers. The numbers that began flashing where unreal. I looked at the tech as he was listening to her with his stethoscope and asked "That can't be real, right?" He responded that he was checking and something seemed to be wrong with her. Another tech called out that they were going to get a crash cart ready. Then after less then half a minute, she stabilized. This happened 4 other times. Thank goodness that so much continued to happen or I think I may have been stuck on the chair in shock. I can not begin to describe how my own heart plummeted when this was going on. Not even going to try. 

The rest of the time was spent trying to iv her and cath. These are problems areas that she has had continuously over and over. After poking and fishing more than I can count, they finally got an iv in her arm. But after numerous failed attempts, they could not place a cath. A few swabs and a chest xray and fever later and the decision was made to send her to Primarys. 

As we were getting ready to transfer, she became quite agitated. I called the nurse, but we couldn't figure out what was wrong, a few minutes later, her iv alarm went off, it had infiltrated. Her poor arm was so red and swollen. Thankfully, it has gone down without any problems. The team at Lakeview was amazing. Especially Suzzane (?) who stayed past her clock to help as much as possible and Jennifer who made the transfer process as smooth as possible. And the three male techs whose names I can not remember.

The nurses at Primary's were very nice, always have been. But once again, they could not cath her. It got to where I had to leave the room and just go cry in the hallway. However, the iv placement was a breeze. First time, no fishing. Thank you Meggan and Jim!

My mom and two of my siblings had been driving up from AZ and came straight to the hospital. SO grateful to have them there. 

They ran more tests, put her on an iv, gave meds and watched. The doctor is one I can not begin to describe. If I go into too much detail it will just infuriate me all over again. It got to the point that I had to ask him to leave the room, it took a few requests to get him to leave, but I feel (and have been told) that I did it nice enough. 

The nurse, Meggan, was amazing. She also stayed past her schedule to make sure we had everything headed in the right direction. She listened and validated and gave voice to our concern. And I am sure had to deal with the Doctor.

With the information that there was nothing they would do for her there if we stayed that we couldn't do for her at home, I made the decision to leave.
Her heart rate has continued to be fairly high and have a few hiccups. I'm taking her to see her primary care doctors office tomorrow to make sure everyone is on the same page.

Right now I am still trying to get over the words "crash cart" and the feeling of total lack of faith in doctors that are supposed to help. I am very grateful for my family and my husbands family and all the help they provided over the past 48 hours. Also to my wonderful friend that kept my rs president up to date and brought in dinner tonight. I had no emotional/mental capacity to explain what was going on, and she took that burden off. My expectations of myself to be a regular Martha Stewart this Christmas Season are being sifted out, but that's ok. My tongue and I are enjoying everyone elses Martha Stewartness. :0) 

Chalk this up to another weird monthly excursion to the hospital. Man, teenage periods are gonna be such a breeze in comparison.

10 things you may or may not know/ have guessed.

I came across this 7 Things You Don't Know About A Special Needs Parent | Maria Lin the other and thought I'd do my own version. But mine will be condensed mostly due to number one.
#1 I like her number one. I am tired. So very tired.
#2 I worry. About every little thing. And when I try not to overreact and treat a symptom as a normal kid thing, I beat myself up and feel guilty about possibly missing/ignoring something important.
#3 I get so frustrated with doctors and having to defend my concerns that sometimes I really start to think they may be right, I may be crazy. Then Kotah has an episode and instead of validating, it makes me feel worse.
#4 I love monitors and oxygen/I hate monitors and oxygen. Kotah doesn't need them all the time, and I hate the burden they cause during the good times, but if we didn't have them, we'd be in the er a lot more, just to make sure she's ok. Like when her whole face was purple earlier this week..... but her sats were at 97. Or when she coughs and coughs but her sats are still up. I hate having to force the oxygen on her when she needs it. That is the worse for her. She has my sense of nose bubble space required.
#5 I like to tell people everything is going well, mostly because the reality of staying up all night hoping with don't have to rush to the hospital is too hard to deal with. Hearing myself speak how I really feel usually opens the floodgates, that is why I down play everything and seem like I have such a good attitude. Sorry to burst y'alls perception.
#6 I really have no clue how you can help. I get asked that a lot. But seriously, I don't know. I am not sure what I need. We have figured out how to make life work for us, and thinking about how someone can help or what I need usually just reminds me of how hard this can be and opens the flood gates - see previous number.
#7 I really want to hear about your life, about your family, but sometimes I can't even remember how to have a normal conversation. If we are talking, just bring up fun random things. I want to know. I enjoy hearing about anything. I might not ask, but just launch into whatever floats your boat. I will greatly appreciate not having to continuously talk about stuff that you have probably already heard from me before.

#8 This is a little more open then I would like to be.
#9 I love my life and while I wish it was easier, I wouldn't trade any moment of it
#10 When my heart is full, it leaks out my eyes :)