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 :)

The latest

Wow. The past couple of weeks have flown by. A week before Thanksgiving, Kotah had an episode of ragged quick breaths. Her heart rate and oxygen went down. I was yelling her name and tapping her, but it took her almost 2 minutes to pull out of it, and this was all while she was sleeping. I seriously thought that she was dying. It was a very frightening moment. I was getting ready to call 911 when she calmed down and her sats started going up. Then Kotah went into shock the day before thanksgiving. That was another scary moment when we walked into the ER and the nurse started rushing us towards a room calling on her little beeper thingy "shock protocol in room two. We have a shock protocol people!" After stabilizing, they sent us home. But we saw the doctor two more times that week. She finally pulled out of it about Sunday/ Monday. It feels like its been a year, not just a few weeks.
Enough doom and disparaging.
Kotah has been in the process of cutting 4 top teeth. So far I think we have two in. She loves to play peek a boo and gives kisses. She doesn't crawl, but has the cutest butt scoot. She likes to sing and thoroughly enjoyed the sound of music live the other night. she met Santa last night and was all smiles and even said his name.
Katie is getting excited for Christmas. She wants to buy everyone toys. Someone left an elf on the shelf on our porch and since then she has been carting it everywhere so it can make sure she is nice. The other day I was feeling down and Katie noticed and came up and sang me a made up song about how much she loves me. I do that with her all the time but never expected her to catch on like that. I shouldn't be surprised though. The other day she helped me fold clothes and only needed to be shown once. not easy washcloths, no: shirts and pants and onesies. She did the same thing when ty taught her how to tie. Someone want to come explain calculus to her while she's at it?
Ty recieved a scholarship which we are pretty excited about. It's been getting pretty hard with school and work and a sick baby but he is pushing forwards and doing a great job!
I am enjoying the Christmas season, the time I get to spend with Ty and most of all my cute cute cute girls. I am super blessed!

The impossible

Funny Funny Funny! Only Dakotah. We went to the doctors yesterday for her 9 month check up and also to check on the status of some tests on the whooping cough. They should've been in on Monday. The doctor told me she had called the lab and apparently something had happened to the sample and the machine which caused some weird problem that has never been experienced before so we had to redo the tests...... The doctor was shocked that this was happening. I think I am beginning to get used to the fact that the impossible follows Kotah around.
"The impossible can be come possible if you're awesome!" Dakotah is truly awesome!

The last two weeks

Yes, yes the title is boring. When I start getting more sleep and my little gray cells (name that series) get restored, I may become more creative. As it is, I save my creativity for my girls, cooking and squeeze in some leftovers for preschool.  :)
Two weeks ago, Kotah started getting what we thought was croup. She is cutting her top 4 teeth and Katie used to get croup every time she cut teeth. Well, after a week of sats dropping, we took her in last week. With her slightly deformed trachea, every time she gets an upper respiratory problem, it is magnified. We did all the normal things, humidifier, cold walks, hot steamy showers, nebulizer excetera. But she wasn't getting better. Some days were better than others where she would be able to keep her levels in the upper 90's/ 100 by herself. But some days were bad, where she would be in the 70's while on a doubled dose of oxygen. Then her coughing took a turn for the worse, she started gagging and choking and throwing up when she would cough. Back to the doctors yesterday. The doctor told me the reason she had us come in is because if she had to place a bet on a child getting whooping cough after already being vaccinated, she would bet on Kotah and wanted to see. Sure enough. Sigh. The rest of us are all fine and healthy. So antibiotics, attempt to rest (you ever tried to make a 9 month old rest?) and another visit next week.
Other then her being sick, Kotah really is such a happy child. She can wave and say Bye Bye now. She tries to imitate what she hears. Her favorite book is Green Eggs and Ham because we make funny noises on the page where they are under water and she can do it too.
These past few weeks I have been learning and recognizing a lot about myself. The biggest thing I have realized is that I am a lot more chill than I used to be. With every thing we have gone thru with Kotah, I have come to appreciate and just enjoy the moments. The little things that I used to let bug me dont anymore. I am less quick to judge (though I still do and I continually work on it). I have become so patient with Katie. I love having my house clean, but I can survive if it's not. My lap is somehow big enough to hold two kids, but small enough to squeeze into the middle of the back seat. I am more concerned about the long run and how my actions now will affect the future for my kids.
This all came to head a few days ago when Katie made a mistake. I handled it calmly and in a loving manner. Someone commented to me that if she had been her child there would have been great repercussions for what had occurred. For me it didn't even cross my mind. Katie is three. She was tired and hungry. It's my job to teach her. We are on different levels, so why should I take personally every mistake she makes as a deliberate attack on me from her? When she talks back or argues, instead of a my way or the highway approach, we discus the situation and I try to show her the respect I would show to anyone else. She is right and reasonable in many aspects. Just because we see it differently doesn't mean I am right because I am older. This has come with much learning. I am so glad though to be able to  (most days) respond with this in mind. That is all due to many prayers and following the promptings of the spirit. I have truly been stretched to grow and become better in that regard. Many times I know I wouldn't do something on my own, but when the spirit prompts me and I follow through, I begin to become the kind of person that I really want to be.

Oxygen again

Kotah had a sleep study about 2 weeks ago. The results came back this week. There is something wrong...... but they don't really know what. She has over 170 episodes at night but they are not major enough to indicate what the problem is. The only thing they know for sure is that she needs oxygen at night.
I'm very grateful for oxygen, but this is a little frustrating. I did get asked the other day if she could be used as a case study. Maybe that will turn up answers.

The little (hilarious) things

Because I don't have a smart phone and can post the everyday funnies online, I keep them locked in text messages on my phone. But my small phone is running out of space, so I am going to type them up here for your enjoyment.

Katie has her own way to sing songs. For example, "all the single ladies" is "all the single legs". "Que Sera Sera" is Que T Que T (Katie).
We saw a fire truck the other day and she was worried that Aunt Jennifer was on fire. Aunt Jenn introduced us to "this girl is on fire". Whenever we sing it, katie always yells and pretends she is on fire.
Aunt Jenn also told us about the screaming goat. So whenever Katie hears "trouble" she screams.
For anyone who knows scripture scouts, baby, pretending to be Nephi sings a song "I want to know for myself". The other day, Katie asked me if she could do something. I said no. She asked WHY? and then proceeded to sing "I want to know for myself".
She loves He-Man. She is also in a learning stage about "poop". Everyone poops. Every animal poops. One day she said "He-Man poops, but his poop is good poop cuz he is a good guy, but they dont have a potty in their castle." She knows that all animals poop because mommy refuses to get anything because it poops. The other day she said "But mom, if we got a small dog, it would just be small poop."
I tried to get her to eat her meatballs the other night and they were different sizes so I called them Daddy meatball, Mommy meatball and Baby meatball. It didn't work. "If we eat them, they will die!"
"I'm a kid and you're a dolt." (adult)
For the 24th of July parade, we walked down 30th and put blankets right on the corner the day before. It was about 330 and katie thought that the afternoon traffic was the parade. She sat and waved to all the cars for about 15 minutes.
She likes to eat Cheetos dipped in peanut butter.....
And today on a slightly teary note, I was downstairs doing laundry. Literally just gone for 1 minute and katie comes down the stairs saying "kotah wants to see you mom". I remembered then that kotah can scoot around on her bum quite well but I had left her in front of the couch so I wasn't too worried. I asked katie "Can you make sure she doesn't come down?" Trying to get katie out of my hair. She said "SURE!" (she loves to help with kotah, most times) and I could here her talking to her. As I am rounding the corner to come up the stairs with a basket of clothes and getting ready to tell katie that sitting at the top of the stairs wasn't really what I meant, I notice that katie has both arms wrapped tightly around kotah who had managed to get over to the top step and she was leaning back to keep her from falling down and just singing songs to her. Katie got to pick out a toy at the store for that one, and I have learned that Kotah can move, FAST!

Now for Kotah:
She can say quite a bit and loves to "sing". Tonight she started pulling herself and walking around the edge of a couch. This is a HUGE thing for her because it was one milestone the doctors were watching for in worries about delays. She still cant crawl on her hands and knees, but to go from sitting to standing and walking on her own is HUGE HUGE HUGE!
She loves to play with Katie. Anything to do with Katie makes her happy. They played peek a boo the other day and the tow of them were laughing for 30 minutes straight.
She loves her da-da and when she saw a picture of Ty the other day she cuddled with it while saying da da da da da. When I took it away (she wasn't supposed to have it) she cried DA DA!
She has been having a little rough week. She cries if I don't hold her. Like EVERY SECOND I'm not holding her. If I lay her down after getting her to sleep, she starts crying IN HER SLEEP until she wakes herself up. Sigh. Ty has been so helpful whenever he is home. Even if he is exhausted he will let me sleep in, or play with the girls so I can get stuff done, or clean the house. She has a sleep study tomorrow night. I hope it provides more detailed answers.
Kotah has two teeth. And when she wants to, she can leave marks. She loves to give flurburts and thinks they are kisses. She loves to play in a room with other kids in it. She can be quite content just watching everyone around her. She loves all of her new baby food. She can't eat alot, but loves to try everything. Katie gave her a cheeto puff the other day and she was so excited to eat what katie was eating. As she is moving around a lot, she is starting to loose her baby fat, but still is very stocky.  She loves baths, being outside especially on the grass, Elmo, books, anything that is Katies, anything that is mommys, playing with the drum and drumsticks, Katie's room, Katie's hair, Katie's friends..... and so forth. She tries to say Katie's name "A-E".

Results

Soooo the mri turned up nothing, meaning that the episodes that they were worried about being strokes or seizures are not.
It was a relief, but also a burden when the neurologist told us that. But it was also a very good visit with him. He asked about her medical history and I kinda got frustrated. We have been in the hospital 3 times. We have gone over EVERYTHING with each and every doctor and nurse and tech. Do they not share notes????? So I just did a comprehensive rundown of her, and her immediate family. He persisted and I mentioned that I knew there was hirsprungs in my extended family. This is where it gets interesting. We'd already looked into this the first time we were in the hospital so I thought it was out of the picture. He sat on his computer for a few minutes and then said that the genetic testing they had previously done didn't cover it and that there was a genetic mutation of the disease that can present with different issues and apnea, strokes, seizures were among those. He said that basically it is a disorder that occurs in the brain stem and no matter how many tests they run, it wont show up 99 % of the time on scans. Its a blood test that the insurance may not approve, and even if we can prove that it would run in the family, the insurance would just say "assume that it does" and still not approve it.
It is not life threatening. She may still look like she is having seizures or strokes, but it wont affect the brain. This disease/disorder is in the automotive nerves. Its either this or there is an immaturity in her brain stem. But the doctor seemed to lean towards the genetic mutation. He ordered an eeg and he said that as long as it was normal, we should try to get the blood work done. It was. He also made sense of all of her other weird symptoms/quirks.
Poor Ty and Katie. They sat around in different waiting rooms all day. It was so emotional. We all were (and are still) worn out. By the time we were finally leaving, Katie was close to having a meltdown and I was ready to scream. A nurse came up and gave Katie and Kotah stuffed animals to take home at that moment. She sat and calmed Katie down as she talked about the animals. It helped this mommy!
As we continue to try and pin down the diagnosis, we are trying to adapt to our normal. I think I was looking forward to a diagnosis that would have a fix and eventually everything would be ok. There is no treatment for this. Just a way of life. Identifying symptoms and how to handle them when episodes happen.
Even though it's not some horrible thing, it has worn us all down. I guess the best thing about feeling like this is that even the little things pick me up. A video of The Swan Princess for .99$ to watch for movie night tonight. (and probably 3-7 times on Monday), Katie and Kotah laughing at each other for no reason, Katie's funny sayings, Kotah trying to mimic what we say and do, Ty's reaction to her saying "Dada", all the little things to smile at that on better days I sometimes overlook.

MRI and finally: pictures

I know I should probably post this AFTER the fact, but right now is the only time I have to myself and I need something else to think about instead of my baby crying as I left her in the prep room for the mri.
This past week has been a mess. Pass out episodes, er visit, new doctor, chiropractors, feeding therapist telling me that the previous doctor (the one that called me crazy) called her to try to see if she thought I was making it up and now we are waiting for the brain and neck mri and then later today we see the neurologist.
I'm not sure which I'll cry harder at: them finding nothing wrong, or them finding something wrong. As the week has gone on, Kotah wont sleep unless I hold her, she wont be calm unless I hold her. So needless to say that any cooking or cleaning has been either a miracle, or a scream fest.
Since I haven't posted any pictures, here are some:


first day home:

daddy and his girls

blessing dress. I made a different one first, but when I went to iron it, I forgot that I had put clorox on it to get rid of a stain and hadn't washed it yet...... it left a brown mark, so this is take two. turned out cute!

 Katie loves cotton candy!

A science experiment from sid the science kid, showing how the stomach works to digest food.

 Hey, if the stomach turns food into mush, it's gotta poop.

 Playing in our "mud pool"

SISTERS! So cute! My girls are amazing!

Surgery, improvement, confusion, crazy and chiropractics

Kotah had her tongue tie and lip tie fixed a few weeks ago. I went in expecting a little tiny blueish laser pointer. I was sorely mistaken. Imagine a tiny barbie sized welding iron that just burns/melts away the flesh. It was quick, no blood, no risk of infection, but definitely NOT painless. Poor Kotah! I had nightmares about it! She recovered ok and her eating improved somewhat, but more so cuz she was in pain and didn't want to eat as much as she usually did. After she felt better it was back to old patterns. The doc wanted her off her monitor as we hadn't had to stimulate her for over three weeks. A week later we had another blue cold baby episode. Back on the monitor. Last week the doctor, in as nice a way as possible, told me I was crazy. Even though this has happened at the hospital. Even though others have seen it. Because she is 20 lbs and no signs of obvious mental delay it must not be a problem. If it was really happening, she would be a failure to thrive. I was pissed to say the least. Yes, I may look like a mom who is loosing it, but its because of what we're living through. I am not making it up.
I spent hours looking things up in ty's medical dictionary. Then I went over to a friends house and got some ideas from online. I called a chiropractor. I wasn't even sure if they would take our insurance but I didn't care. Finances can be so important and they are. We stayed up late last night trying to figure things out. But when it comes to your child, no expense is too great.
The chiropractor was will to work with insurance. We got in that day. She knew what I was talking about! She deals specifically with infants and children. It is called near-miss SIDS and it happens when there is pressure on the brain stem from vertebra being off line. She warned that as she worked on Kotah, there may be more episodes at first. Yesterday was no exception. It was a bad one. I was scared. But the thing that is just a little worse than reviving my child is knowing that if I had called 911, we would be in the hospital with nothing being fixed. So the chiro called a friend who works with these specific cases. One where, after finding nothing wrong with the baby, the hospital sent the parents home with the instructions to shake the baby when it stopped breathing. That was the only thing they could find. I almost cried. Those parents need a hug! They sound just like us! So we are headed to Draper for the next few days to have her taken care of.
I hope this works. Yesterday the sleep specialist called and said it was her understanding that this was an ent issue. The ent has washed his hands of it, the GI clinic also. I need to find new doctors! Something is wrong with my child, but the only one who seems to believe me is a chiropractor (for which I am entirely grateful for) but yeah, try to explain that at the hospital.... I will be called crazy a thousand times if it means finding what will help Kotah. This is becoming so hard. I am quicker to loose my positive attitude each time. But the blessings and miracles still abound.

Third time around

We are in the hospital again. This time was just for a 24 hour PH probe study. The two nights prior Kotah didn't have any apnea spells. But she was right back on track last night. After about the 8th time the monitor went off, as the nurse and I sat there watching her waiting for her to self correct or change colors, the nurse turned to me and asked "do you seriously do this every night?" Honestly though, I think I got more sleep here than at home. Something about having a whole staff full of eyes and ears that are also watching out for her.
We are still waiting for medicaid to come through to get her tongue tie and lip tie fixed. (and hopefully help out with all the other expenses as well) So far our insurance has saved us over 25 grand, but its the amount they didn't cover that is a little stressful.
This time around we were a bit more prepared and I think we have avoided any emotional breakdowns with Katie. And we were well versed on all the support the hospital has to offer, so we've kept well feed and entertained.
We get to leave here in 2 hours and head home to continue life as we know it. Our normal for now. The results of the test will be in in 5 days and we will go from there. I have to count my blessings. I have met two families today that have been here over a month. One waiting for a heart for their baby and one waiting for a son to be recovered from a car accident. But with both these are their only children. I can't imagine what I'd do with Katie if we had to stay that long. Even though they still haven't figured out what is wrong, I am grateful Kotah is healthy enough to stay home most of the time. We'll just keep enjoying and be thankful for each moment.

Short quick info

Kotah is on an apnea monitor. It is proving to be very useful and helpful (which i guess is also scary) We saw the speech therapist and the ent doctor. We've been told she is a special needs baby (in a physical aspect i think as most babies hardly go through and need everything she does) They are trying to get us into a GI doctor next week to schedule a scope which would require anesthesia and a day long hospital stay, as long as nothing goes wrong in the surgery room. It's all still kinda crazy!

A prompting, a dead baby, second hospital stay and nothing wrong

So we were waiting and waiting for the upcoming visit with a cardiologist. Then we received a call Wednesday afternoon saying that they wanted to do the cardiogram Tuesday morning before the appointment. It felt amazing! I was pretty sure the weight of the world had been lifted. At least a small potion.
The past 4-5 days had been a little rough. Dakotah had been turning colors and holding her breath and being really lethargic and just all together being not her normal self. I was guessing it was teeth.
Thursday night, after a fun day, I had gotten Kotah to bed and finished getting everything ready for a fun day the next day. Kotah sleeps in her car seat, in a stroller, right by my head. I had checked on her one last time, after checking on Katie and was settling into bed. Just before I drifted off to sleep, I received a very strong impression to check on Kotah. I turned over and placed my fingers on her soft spot to check for a pulse. This is not a surefire way to check, but it is the first thing I do and a reassuring touch to make sure all is ok. I could not find a pulse. Kotah is the type of baby that wakes up to touches and noise quite easily. I called her name. No response. I turned on the light and pulled her out onto our bed. She was white and cold and clammy. I listened to her chest for a pulse or breath. Nothing.
By this time I was freaking out. I yelled for Ty and started shaking, patting and rubbing her. She started breathing and had a pulse after a few seconds but it took another hour just to get her to become conscious and respond. I was a wreck.
After she was awake, I called her primary care physician after hours line. The nurse that I talked to said to watch her and call the doctor in the morning. I sure as heck wasn't gonna fall back to sleep. Katie woke up and the three of us spent a few hours watching a documentary on Burmese Pythons and their effect on Florida wide life. I was thoroughly grossed out by it. Katie loved it. "Look! It is swallowing a crocodile! Look! The guys cut it open to look at the crocodile! COOOL!" I was looking for a bowl to barf into.
The doctor sent us to Primary's to do an emergency echo cardiogram. It came back normal. But we were admitted for another stay to observe.
Though she did have dips in her sats and a hiccup in her cardio rhythm throughout the night, she was fine. They placed an IV "just in case" and that took forever. The way the techs put it, if they had to place an IV in an emergency, they wouldn't get it in fast enough. It took them about and hour and 3 tries.
This morning they did an EEG which was looking for seizure activity in the brain. That was normal.
They gave us a different specialist this morning. This doctor has worked on studies with children that do the same thing as Kotah. I was so happy and relieved to learn that she is not a rare case! Something about knowing that you're not alone. According to the doc, Dokotahs issues with laryngomalacia, aspiration, reflux and a deformed trachea are the culprits. If all issues present in intensity at the same time, it causes breath holding and color changing. Supposedly something to grow out of.
As for now, we are supposed to do a bunch of follow ups next week and check in with a doctor at least once a week from here on out. While I am glad that they have done everything possible to check for any life-threatening issues, sometimes I feel so helpless. I don't know if I could handle another night like Thursday. Sometimes I am so scarred that we are just going off of borrowed time with Dakotah. I guess we just try to enjoy each moment and not live in fear. And be very very grateful for the Spirits promptings.

Another mystified doctor

We had her 4 month check up today plus a review of how she is doing since the hospital. He has decided that she needs to get an ECG due to her blueness. And even though she can bring a spoon to her mouth, she cannot eat food, because if she gets anything but breast milk aspirated into her lungs, she could get pneumonia and die. So says the doctor to deter me from trying to feed her. At the rate we are going, she might have to hold out til 8 months, or get a tube down her nose, or a tube into her stomach. He was not convinced about her blueness. They will have to put her under to do the ECG because she is supposed to hold still. I so hope that it will be a few hour thing and not a few days thing. She is rolling and trying to crawl. She has gotten her legs down, her arms just get in her way. I am so grateful for my mom and my sister!

Info more put together

So, a little more info:

She does have laryngomalacia and a slightly deformed trachea. Nothing that they decided needs surgery. She had healed from tuesday to friday. It was a miracle. But she went blue on the operating table, which is why they decided to keep us.
They ran a bunch of blood tests and urine tests the first night. A blood test did come back with some abnormalities which was why they kept us a second night. They ran an ekg, chest xray, and genetic blood tests over the next few days.
As they were preparing to discharge on monday, they decided to keep her another night. That night she started throwing up violently, refusing to eat and her soft spot swelled. They put in an iv and started her on antibiotics. And ran a ct scan and a renal utral sound to check her kidneys. Everything came back normal for all the major stuff. She did not have a fever, but everything else points toward meningitis. And since she has been on the antibiotics, she is starting to do better.
The doctor called me yesterday because he was not convinced of the results of her iron and had ordered them tested again. It turns out, she has a low iron level which causes her to pass out, and to only eat for a few minutes. The turning blue is something stenosis.
We are still waiting for some genetic tests to come back, but we are happy to be home. She is a little peaked from the antibiotics, but her soft spot is no longer swollen.
It has been such s miracle for my mom to be here. I don't know what we would've done without her. Tomorrow morning she leaves, but my sister comes so I am looking forward to that! Thank you for all your prayers! I know that they have helped! The nurses and doctors at Primarys are amazing! The way they have so many programs set up to help families is incredible!

Going Home!

After a very very very hard night, and many tests today, we are headed home. Kotah refused to eat and had an iv placed. She hurlled pretty much everything possible. And her soft spot was swollen/full. They did more blood work, had a renal ultra sound done and a CT scan. Everything has come back normal. So whatever is going on is decidedly non life threatening. There are still blood labs out that haven't been completed yet, but as she is now fully off the oxygen and the iv, we are free to go. She is a completely different baby from 24 hours ago. She loves playing with her hospital buddy doll that is half the size of her. She has a smile for everyone.

Ha ha! Just kidding.

So my last blog was a lie. We did not get discharged. We were prepping for it and getting ready when the doctor came in and said that there was a change of plans as a test had come back positive for infection. So they put an iv in and gave her an antibiotic that way. She has since stopped eating all together. Her normal feed is at least every hour for 2-3 minutes. It is 12:15 She hasn't eaten for 9 hours now. And she has projectile vomited twice. She is extremely grumpy and exhausted. More so than usual. They tried to put fluids thru her iv, but the little stinker had grabbed it with her hands and dislodged it. Even though they had taped it to withstand the end of the word. So since she wont eat and has thrown up again, they are placing another iv and taking more blood work.

This is the worst she has been the whole time we have been here. Even minus all the stomach issues, she has been having oxygen level issues today. She has been able to go off of the oxygen, for the past two days which was amazing, and had no problems, until this past day. I am so glad they decided to keep her. I can't imagine going through this at home. We would just be coming back here. Blessing in disguise.

Ty and Katie got to come hang out with us for a bit today. Ty was able to get Kotah to sleep while Katie and I played hide, count and scare. It is Katie's version of hide and seek. I've missed us all being together as a family. Katie entertained the staff by running up and down an empty hall.

We have been going through quite a few nurses as they are over staffed (or under babied) and keep having to send people home. I am sure I will have no voice by tomorrow because I talk most the day long.

With this new development in her health, we could be looking at even more days. She can't go home needing an iv. We are surpassing the time the brain surgery kid spent here. I am glad that she is sick here rather than at home. But I can only imagine how she feels.

Hopeful!

After much poking, they are actually considering sending us home today! Hurray! She has had blood work done for I am pretty sure everything in the book. The first two times they took blood she cried. This last time, she was calm. Sad thing to get used to something like that. We got a slightly new team of doctors today and even got one that is here from Denmark/Germany. We are still waiting for a few more labs to com back, but I am hoping that we get to leave here soon if everything is ok. Of course, because they mentioned discharge, she went an had an oxygen level episode. Hopefully it wasn't bad as she hasn't had any problems like that for the past two days. But I am so ok staying if they are concerned. Home just sounds really nice! The doctors have decided that reflux and laryngomalacia, torticollis, and some type of non-life threatening stenosis do play a part in whats going on, but it's not the whole picture. Right now they are checking iron levels to see if that is also a contributing factor. This is turning into like a very big picture. Her medical chart is like a masterful work of art by Van Gough. The words that the doctors here are using : Curious, amazing, frustrating, mysterious, hard, ect. One mentioned using her as a case study for an upcoming conference. She has been living the very elongated version of an episode of House. :)  I really do want to go home, but I want to do it in the most safe way possible. If Kotah needs to stay, then stay we will, And we will do so gratefully because it is awesome that there are places and people that can help in these situations.

1st full day in review.

We have been talking to a ton of people today. I feel like I am going to loose my voice. We were assigned a team of specialists this morning and I was concerned that we wouldn't be able to talk to them til tomorrow. They were all in within the hour and had a plan in place an hour after that. Kotah has been under an apnea log watch, they sent in a lactation specialist, they did an ekg, they drew blood and she got a chest xray. Her blood levels came back with abnormalities, but they couldn't specify what exactly as it was not a huge thing. Her chest xray came back normal so they will be drawing more blood in the morning. Poor thing!!!!
She has been pretty vocal today in expressing her displeasure in being here. They want us to see a different specialist on tuesday. I would really like to not be here on tuesday. They are basically at this point ruling out all life threatening problems.
I never thought this would be so exhausting. I feel like I am getting even less sleep here then at home. I miss Katie so much. She was crying when she had to leave today. It broke my heart. Tonight we have the room to ourselves (knock on wood, as long as no one comes in in the middle of the night) so I hope that will help. I got to talk with the mom for the little boy and they have been through a lot. She was super kind, showing me the ropes of how to work things and where to find things and what to say to get what I needed.
I wish I could answer peoples phone calls and texts, but alas, my phone has little to no reception. Thank you all for your concern, prayers and love!

Not the update I wanted to write

On Tuesday, we came and had a swallow study done. At that time, they determined that it was more serious than we previously thought. A surgery was scheduled for today. They were planning on looking down her throat and lungs to check for additional issues and to trim some of the floppy skin on the epiglottis ( the skin that covers the trachea when you swallow). There was an amazing tech in the imaging department that I felt was truly Dakotah's guardian angel. She could see that I was running off of no brain and she stuck with us the whole time and advocated for Kotah to each of the doctors. She in turn explained to me everything the doctor said.
We arrived here at 12:40 and Kotah hadn't eaten since 10:15. Then they had three emergency surgeries. They didn't take her back until 5. The little trouper slept the whole time. After just a few minutes, the doctor came out to show us some pictures. The floppiness was gone. Miracle! Her trachea is slightly deformed and smaller than usual but they expect her to grow out of it. And it isn't considered the source of the problem. While in the operating room, she went "dusk" which is where the skin around her lips go blue. This is a pretty common occurrence for her, as is passing out which has increased in frequency.The doctor informed us that this is a neurological issue. All the simple problems have been ruled out.
I was not expecting that. So here we are, waiting out the night. We get to meet with a team of pediatric specialists tomorrow morning. And go from there. It doesn't help this mommy that they placed us in a room with a child who just had brain surgery. I lost it for a minute or two. She is proving to be a delight and challenge. When coming out of the anesthetic, she was blubbering and gabbing about everything. If only I knew what she was actually saying, I am sure it would've been a hoot! And she decided to give me a heart attack. Her stats were dropping so I picked her up to comfort her and blood went everywhere! she had kicked out her iv. Scare of the night! So far.
Right now I am not sure how to feel. I am extremely grateful for the miracle of the healed epiglottis. Prayers are amazing!!! But I am so shocked and numb to even try to comprehend that she has brain issues. To bad this is a children's hospital, no sedatives for the mommy, although they encourage a full nights sleep, stating that they will take care of her. We have had so many miracles, I guess that is so that I can believe that more will come. Keep praying. Call in reinforcements.

More details than not

When we went into the last appointment with the doctor, it was very nice. Dakotah had turned colors a few days prior and I had talked with a nurse who said that it could be SIDS and they might not be able to do anything, but that the second specialist would try his best. When we got in, she was hungry but I knew that if they were gonna do tests, she needed to not have eaten. While I was asking the nurse about that, the doctor poked his head out and said not to. He had already gone through her charts that had been sent over, ordered a scope and cleared out the rest of his day. He sat through my 9 pages of notes and then said "I am pretty sure I know what the problem is after talking with you. Lets do the scope and check." He walked us through everything and he was right. It is a flap of skin in her throat that is too big and closes off so she can't breath or swallow at times. Mostly kids grow out of it and it isn't that big of a problem. But in Dakotah's case, it is inhibiting her normal functions, but she doesn't have a failure to thrive which is really good. They are giving it til this coming Tuesday for her to outgrow it. At that point, we go in for a swallow study to see how bad of a problem it is causing her swallowing and then we see the doctor again right after (who again cleared out the rest of his schedule for the day for her) to decide if surgery is necessary.
It was so nice to have him take the time and make her a priority. He knew what was wrong and what to do. He was very calm and said we had done everything right to help her. He wasn't worried about her dying :) which was very nice to hear. He said it can happen very rarely but that we had taken all precautions and he was sure she was gonna be fine.
Needless to say, the stress level is down greatly in our house. She still has problems. They want us to try her without oxygen for a little bit everyday to see how she does. Sometimes she is fine, but a lot of time she struggles with out it. And there are times she struggles with it. It cant move the skin, just give her enough back up so that when she can't breath, she is ok on her levels. She did pass out the other day and scared the crap out of me. But she is growing great. She began rolling over the other day and loves to mimic faces. She tries so hard to giggle and laugh. She is a very easy going baby as long as she is being held by mommy. occasionally she will let others hold her, but not for long. Each birth should add an extra set of arms for the mom! She has a great personality and smile. Knowing what is wrong has made things easier to deal with! The prayers on her behalf, from family and friends and strangers are so appreciated. The abundance of little miracles and big have been amazing!

Real quick

Due to screaming child at home, this will be super fast. Dakotah has laryngomalacia. It is a grow out of thing. Just stay on oxygen and a monitor for a few months. In two weeks we have a swallow study to determine if she will need surgery. Very good doc appointment today. Amazing. Stress level is down a lot. Still keep doing what we're doing. But not so afraid of the unknown. Hurray!

Scattered update

It's the small things that make a big difference. Since starting the oxygen, she slept 6 hours straight in one night. 6!!!!! She did so well the past few nights, I decided to try her on her back last night. DUH! What was I thinking?! So this morning I hooked her up to her oxygen, and put her in her stroller. She was out! At least, I think she is.... I left her in the very capable hand of her daddy and big sister and a monitor. Yup.
After the oxygen test, they took the monitor away. I was a complete wreck. Here was this nice little device that could warn me before it got bad and now I had to rely on my own (seriously diminished) ability to recognize when something is wrong. At church, my friend who has had a preemie, told me that she had a monitor that I could borrow. What a HUGE blessing and miracle. The stress is greatly reduced!
She is doing good though. No more attacks when she is asleep, but only when she is awake. She just drops for whatever reason.
On another note, if your child is suffering from an extended period of pink eye, please do not bring them or their unmedicated/ contagious siblings to nursery. Katie got it. While I do have meds and hers is almost gone, now Ty is getting it. And trying to tell a 3 year old "don't touch the baby" or "dont get within 10 feet of the baby or anything the baby touches" is kind of unrealistic. It also prevents people from coming to help hold the baby, and thus long lives the skunk. Thank goodness Ty finished a term this week and has school off for the rest of the week. He got and A and a B! I am super proud of him!!!!

Update on Dakotah

The past few days have been interesting and stressful. After an at home oxygen test, the results show that Dakotah has a specific pattern of where her levels drop. While the drops are quite drastic, they don't last long. And a few times her heart stops/skips beats. This happens while she is asleep and awake. The doctor said that her body is able to recover quick enough so she ordered oxygen for the nighttime, hoping that it will help with those dips and the air flow might also help stimulate her to breath. She said it wasn't bad enough to be too worried, but "I'm ordering oxygen so your baby lives during the next two weeks" doesn't sound so encouraging to this mommy. She wants Dakotah to be seen by another specialist who works at Primary Children's. He didn't have anything for a few months. BUT he does clinics once a week at the U of U hospital and agreed to see us there in 2 weeks. So for the time being, she is on oxygen at night and I am supposed to watch her during the day and gently shake/tap her when she stops breathing or her heart weirds out. I must admit it is quite stressful. I am so grateful to my mom who has been there to talk to and offer support and insight. And my friend who came over and helped hold Dakotah so I could just take a shower. (that darn skunk!) lol

I figure it isn't normal for a mother to feel guilty and scared to leave her sleeping baby alone in a room. That is usually a huge celebration. But this morning, as I was trying to get ready for the day, Katie comes running out of my room (note: every time she goes in there she tries to wake Dakotah up by pulling blankets off her and hugging her and kissing her and it always -unfortunately- works) with a big smile saying "hey mommy! I touched Dakotah and she didn't wake up!" AHHHHHH!!!!!!! She was fine, but I am sure MY heart skipped a few beats!

We are trying not to worry too much. With the oxygen results there are other possible diagnosis: brain, heart, tonsils, ect. I am all for tonsils. Or a central nervous system immaturity that she can outgrow. We truly believe that she will be ok and it wont be a big deal. And obviously, it isn't if she is not in the hospital. I hope the doctor is over-reacting. (come on, you never hint at death in anyway to a parent you are not sending to the hospital) It is kind of hard to see her in distress and have to shake her or tap her and go from this red faced stiff baby to a relaxed happy baby. Night and day difference within a minute.

I am so grateful for all the prayers on her behalf. I know that they are sustaining not only her, but the rest of us. I believe that these prayers are what will help her the most.

Minus the few seconds long scares, she really is a happy, social, chunky and strong baby! She laughs and coos, She holds her head up. She tries to mimic facial expressions. She loves to cuddle and dance. She is amazing!

Dakotah's Update I.E. my big mommy fail

I did not expect to be here last week. Last week I was an extremely tired mom, who thought she was dealing with a normal healthy child. Our world has kind of changed since Friday morning when I was answering normal questions at Dakotah's 2 month check up and the nurse ran out of the room to find the doctor.

A little back story: Since about one month old, I had noticed what I thought was awful reflux in Dakotah. Especially when she laid on her back. She would stop breathing for a few seconds at a time. We changed her sleeping position to a slant and that seemed to help. She still had episodes, but not as long.

The nurse started asking "How long does she sleep? (30-45 minutes at a time maybe if we are really lucky, 2 hours) How often does she eat? (Every half hour to hour for 5-10 minutes at a time) Does she sleep on her back?" When I answered no to that one and explained why, she stopped me mid sentence and said "Sleep apnea." And proceeded out of the room calling for the doctor. He was very calm when he came in and said "I am so glad you came in today and that your baby is alive." Now I am feeling really concerned, but trying not to freak out. (I can really do good at that...) I kept trying to convince him that it was reflux. He would say "Ok yes it could be that, but you need to go see this doctor. You really need to get in as soon as possible."

The medicine he had ordered didn't go through the pharmacy so I figured that I would just call and talk to this doctor he had recommended and wait for the meds to clear. But now knowing that this was a scary situation, i started worrying every time she stopped breathing. Whereas before I didn't. The number he gave me was disconnected so Saturday morning we went and found a different number and left a message.

This morning (was it really just over 12 hours ago?) I woke up and felt prompted to call. So I did. Turns out this is the ONLY pediatric sleep specialist in the state of Utah. THE ONLY ONE! And she was booked out til June 6th with a cancellation list of over 100. So I scheduled and got off the phone and cried. I called to Katie and told her we needed to pray that the doctor could see Dakotah today. Not more than 5 minutes later, the phone rang. The front desk nurse said that we were a priority and needed to get in and they had just had an opening for noon. As I ran around putting everything together, Katie reminded me to say a prayer of thanks. It was a BIG miracle.

Ty came home from school to a very frantic, one track minded wife with two children ready to run out the door. We went to drop him off early at work and his boss told him to just come in later. As we sped down to West Jordan I was feeling a mix of gratitude and mommy guilt. I had though it was just reflux, not something really bad. I counted it being really bad by professionals reactions.

When we arrived and as we were getting checked in, Dakotah was sleeping in her car seat and had an episode right in front of the nurse. She was all "you do know that is not good, right?" Yeah, so I am learning. The doctor said the same thing as the pediatrician, "I am so glad your baby is alive today." Me too. I feel that I have been inspired on how to help her in certain situations, such as waking her, or sleeping her at a slant, or constantly holding her.

The doctor ordered a bunch of tests and was amazed that she was able to schedule them right in order for the remainder of this week. The first was what is called an upper GI and that was a few hours later out in Riverton. Ty's boss gave him the day off and he and his dad (who works out there) gave her a blessing in between appointments.

After the test at the hospital (she almost rolled off the xray table) they found that reflux was not the issue. She has it, but not bad enough to cause problems. Cue more intense mommy guilt.

The doctor is pretty surprised that she has this issue. Usually these are problems more commonly occurring in preemie babies. She is a whopping 15 lbs. No failure to thrive here.

The next few tests they will run are monitoring her oxygen when she sleeps- A little sensor taped to her foot that beeps really loud if the numbers get below 92. Then they will run a prob down her nose to check and see if she has something called "something stenosis" where the nose bone is smaller than normal. It is fixable. They will then check to see if her tracical tube and vocal cords are connected and if so it is also fixable. Nothing major. All in all, it is good to know they can fix it. But the fact that the specialist was worried and said "We need to do this fast but methodically so we can keep your daughter alive" was somewhat disconcerting.

So needless to say, sleep is something I am not sure exists anymore. I know I shouldn't feel guilty. But knowing and not doing are two different things. And it is hard to feel like I should even worry about this. I don't want to feel like I am making a big deal about it. There are some many more people out there that I feel have much harder trials. But this is my child. And this seems like a tremendous mountain right now.

Since her blessing however, she has seemed to be able to sleep longer and eat longer without as much a problem breathing. Ty said that if she is ok he will cry because it will be another miracle. I will too. I will also cry at the bills. :) lol We try to laugh at this, because laughter helps us keep moving. I believe that it can happen. I know she will be ok eventually. She is not going to die (thanks a lot doctors for tossing that around). I know that our prayers and the prayers of our friends and family have helped her and us today.

Confessions of a brainless mom

I ate a box of Thin Mints in one night, Twice.

I forget my second child's name frequently.

I let a load of laundry sit in the washer for 3 days.

Katie and I can recite all commercials on TV, and she loves the channel 4 news team. Anyone know where Kylie Conway went? Katie's had a few melt downs the past week when she hasn't been on.

I once sat down and continued to feed the baby after answering the door and realised I couldn't remember if I'd been decent or not when I was at the door.

I thought a skunk was dead outside or something and tried to sniff around to find it. It turned out the smell was me.

I still have thank you cards I haven't sent out yet.

Scripture reading with Katie consists of singing songs from the children's song book while I feed Dakota.

There is more but this is a library visit with both children. If we are on tonight's news for disturbing the peace, I wont be surprised.

Crazy fast no time update

AHHHH! I have no time to write any nice blogs anymore. In between nursing and changing diapers and playdates and Ty starting school and only having one car and doctors visits and everything else there is hardly time to get to the library let alone blog while I am here.
So really quick:
Dakotah Ryleigh Webster was born February 8th weighing 7lbs 13 oz and 19 1/2 inches long. True in form to the pregnancy, there have been a few health scares since birth, but nothing big. She is a healthy and mostly happy 6 week old. She has redish hair and loves to smile and try to laugh. Her favorite place to sleep is while being held but she will allow us to place her in her car seat or stroller to sleep. She is a porker and is already filling out her 6 month old clothes.
Katie is enjoying (for the most part) being a big sister. She has had a few rough moments but overall is a great help and pretty happy. She turns 3 tomorrow. Oh where has the time gone??? She loves playdough, stickers, chalk, Daniel Tiger, playing with her friends and anyone trying to give attention to Dakotah, getting out of the house and helping in the kitchen. She is so smart and loving.
Ty is starting school next week. It will be a great adventure (says the mom who will be stuck at home with two little girls M-TH each week) and in the end will be a big blessing.

Well, the baby is starting to wake up because the parakeets in the library keep chirping. And I still have to run to the store and the post office and be back home in 45 minutes so that Ty can leave for work. When I am on the go I am busy busy busy, but at home its quiet and laid back (and boringly stir crazy!).
I shall attempt something like this next month.

2 y.o. self care

"Iiiiiii, Just SOOOOOOOO OO OOO SAAAAD!"

Thus began this morning. Over the past week we have set up the house to prepare for the baby. (The whole "well your water could break anytime so just go to the hospital when it does" was the extra incentive we needed to get prepped.) We brought half the toy room out to the front room to allow for more interaction with Katie as I sit on the couch. We set up a space for the baby in our room. (Yes, yes we do have 3 bedrooms. I however am a paranoid mother and still have a baby monitor in Katie's room. And I am not a good night wake-er. So having the baby within arm reach is what is best for us.) Katie helped me pull out all the clothes and toys and wash everything. We have meals in the freezer, bags packed, and we even made 14 cloth diapers the other day. (anyone ever gone that way before???!!!! I have no clue what I am thinking!) All in all, I thought she was handling it well. We involve her in everything, and have made matching blankets and shirts for them, and have a few special presents she will get when the baby is born. She sits and has cuddle time with my tummy, gives the baby good night hugs, plays ring around the rosey (my belly has pinch marks from where she grabs on) and sits and sings and reads to the baby.  But she is only 2 (almost 3), and I knew that a day like today was coming. I am sure there will be more.

It started because I pulled out and washed all the "newborn" inserts for the the bouncer, highchair, car seats ect. I left them to dry on the couch last night and woke up to "Oh mommy! Can I use this? Did you wash it for me!??"
Fail= "groan. sweetheart, those are for baby Dakotah." roll over and try to get back to sleep. (in my defense, I was tired. She'd been up with a bad dream at 3am.)

Thus began a sob session. She had hit her limit. The cool toys (teething rings and rattles) were for the baby, the clothes were for the baby, the blankets, the car seat, the play pen, the bouncer, the diapers, the wipes, the binkis, the bottles..... all of it was for the baby. It was just too much for her little brain to handle anymore. (silly mommy thinking that somehow doing this right after christmas when she had gotten a lot of new stuff would help at all.)

"It is a lot of baby stuff, huh?"
Sniff, sniff "YEEEAAAAHHH!"
"Hmmmm, well, it sounds like we need some Katie big girl stuff."
Silence.
"How about a trip to the DI to see if we can find some?"
"OH YES YES YES!"
Tears vanished, she jumped off the rocking chair and instantly stripped so that she could get changed to go.
3$ later we left the DI. Satisfied, if but for the moment. She really will be such a great big sister. She tells me all the time what games and toys and blankets she will share. She even said that she will play ring around the rosey with Dakotah when she is born so that I can take a shower. (This mommy might pull the bouncer into the bathroom and hide the baby!) She is just learning a very important aspect of life. You can give and give and give to others, but ultimately, you have to take care of yourself, too.

Sigh. Too bad hair cuts or pedis/manis aren't 3$.
lol