Pulling at my Heart Strings

Tatum update:  I would say Tatum had a fair day.  She slept really good last night, but once she was up at 6am, she was up for good.   I don't think she fell back to sleep until after 1:00.  Silly little girl.  Needless to say, my morning was a little bit Topsy turvy because of it.  She had a few times where she was having trouble with her secretions, but overall that was pretty OK today.  I am sad because her seizures seem to be in her face a little bit more right now, so her smiles are harder to get.  You have to be really watching to catch them.
When I was getting Hilary ready for the day I said something about Tatum and she said "I am Hilary Jane Walker".  It made me smile, but it just struck me that Tatum will never say her name.  Hilary says her own name so cute.  It got me thinking about all of the things that we will not experience with little Tatum.  I can't stay there too long because it makes me really sad.  The thing that helps me is that I know that she is OK not doing those things here on earth.  I really do feel that.  I talk to her a lot and there is wisdom in her eyes.  She is doing what she is supposed to do.  So hard for me to understand, but I am trying.
We took a little adventure to the American Fork hospital today.  Someone had donated some cute little dolls and so I was taking them to the social worker there.  I decided to take  the girls in so we could visit with our nurse friends.  It really isn't a lot different taking Tatum now than before she got sick.   We just haul a few extra accessories, a feeding pump, Oxygen, suction machine and a sat monitor.  We are quite a sight.  Luckily since we were only going in for a few minutes, we were able to leave everything in the car except the oxygen.  Easy breezy.  It was fun to go and see some friends.  I want people to really meet Tatum up close and personal because I think that she has the ability to touch people and change and soften hearts.
We then went to the Orthodontist with the kids.  We dropped Heidi and Holden off and then I went and picked up the rest of the kids from school.  Back to the orthodontist and they were already done!  They are so good to me.  I am sure they gave them preferential treatment to get them through quicker.  Is it weird to love your orthodontist office?  Call me if you need a referral!
In the midst of all of this crazy day we had been trying to arrange for some things for Halea's 17th birthday.  17 years has literally flown by.  What a beautiful young lady she has grown up to be.
We got home and got everyone settled and had dinner and the Bishop and the Stake President came by to visit.   They are great men who love the Savior.  We have known and admired President Raines for a long time.  It was wonderful to visit with them and share our sweet Tatum with them.  I hope that they could feel who she is.
After all of the activities I was holding Tatum and guess what, 2 more teeth!  What?  She must be miserable  and she doesn't even get to use them.  She does use them to bite the tube when I am trying to suction her.  It is her last line of defense.  Pretty soon I won't be able to get the tube in her mouth! Poor little thing.

It was just a tender day with a lot of good things and some things that made me a little bit sad, pulling at my heart strings.  Tomorrow is also the two month anniversary of Tatum's big seizure.  I can't believe that we have been able to have her for 2 months.  There have been a few times that I thought for sure she was dieing.  I am so grateful for this bonus time.  I really don't want it to end. When is that second coming again?

I was extremely grateful for a three year old today who calls her big girl underpants, "wunderware"!  I hope that she calls them that forever.  Halea did think that nail polish was called "poll nolish" until she was in the 4th or 5th grade because we thought it was so cute, we didn't have the heart to correct her.  She wasn't very happy with us when one of her friends pointed it out to her:)
Grateful for good friends and neighbors who continue to carry us through this difficult time.  Not a day goes by that someone doesn't call or drop something off to us.  People are so kind.  I have learned a lot from their examples.
So grateful for home health that we can keep Tatum home with us.
Grateful for our kids who will sit with Tatum if I need to run somewhere or do something around the house.
Grateful that Tatum can still smile and look at us.
Grateful for the lessons she is teaching us each day.
Honored to be the one chosen to care for her while she is here on earth.  It is a sacred calling, one that I would do for the rest of my life if needed and one that I will forever be grateful for.  
Grateful for the Savior who makes it possible for me to be her mother always.
We love our Tater bug.

Grateful for a friend that let us have this.  As Halea put it "a dream come true!"  Are you sensing a little sarcasm?  It truly has been a help.  I have actually used it a few times.  It just looks right at home hanging in the big white van!

 Someone just left this sitting outside of our garage today.  Hopefully it was for us, cause we took it.  So true, and He is.

Cute Tater bug partying in her Dora jammies.  She was a little worn out from our big day....

And from growing two more teeth, which makes a total of 6!  3 on top 3 on bottom.  funny

Who Needs Oxygen Anyway?

Intriguing title right?  Well, we had a crazy, productive pretty good day.  When I came up from the basement this morning at around 7:30am, Hilary was on the couch!  Oh boy, that is never good for the little girl who can usually sleep until 9 or 10.  Hmmm.   Then I looked over and Tatum  was awake too.  My immediate thought was, I can go to Yoga!  A few of our neighbor friends do Yoga at 8am on Wednesdays.  I haven't been forever because the girls schedules are so weird and I am not about to wake them up to go anywhere at this point in my life. (See I do have some sense!)  I called my other neighbor and she came and picked all of us up.  We were there for about 15 minutes and I got a page to go to the hospital, drat.  Hopefully this was not how the entire day was going to go.  We raced home, got ready, my neighbor took Hilary on an adventure, or vice versa.
We got to the hospital and all of the sweet nurses took great care of little Tater bug.  She was really good the whole time.  I met up with one of my good friends who just happens to work at the hospital and we grabbed some lunch.  While we were waiting for the food I had an impression to check Tatum's Oxygen.  I check her oxygen connections often because I OCD about it, but this was different.  It was a distinct impression.  I pulled the tank from under the stroller so i could look at the connections.  I looked at the gauge and it was all the way to the red indicating it was OUT OF OXYGEN.  A little panic went through me, but I couldn't understand how that was possible, it was a brand new tank.  I pulled the tube off of the connection to see if there really was no oxygen coming out of the tank and sure enough there wasn't!  I turned the tank off and then on again and it registered that it was still 3/4 full.  I turned the gauge on and oxygen began to flow.  I hooked her back up and wanted to throw up.  So there is a sensor on her feeding tube that when the food runs out it beeps at you, but not on an oxygen tank, hmmm.  I think that I would be a little more concerned with BREATHING!  We will now add that to our list of many home health equipment issues we would like to fix.  We are going to invent some things that will change lives I am just sure of it.

Tatum was no worse for the ware.  You would never have known that her dingy mother was hauling her oxygen tank around for no reason, cause it was doing no good.  She is such a trooper.  I hope that when the other kids are complaining to her about what a bad parent I was to them, she puts them in their place and says something like, "oh yay, well she forgot to hook up my oxygen" (which I didn't, I can't explain how it got turned off!)  That will surely shut them up right?  Moral of the story: listen to the promptings!  One more time, Listen to your promptings.  Saved again by the angels that are watching so carefully over our sweet Tatum.

When I came home from our incredible Relief Society class Halea had hymns playing on the computer and was sitting next to Tates.  What a sweet spirit and tone she set for me to come home to.  Thankful for that in my day today.  Thankful for all of our awesome kids, who are braving this tough journey with grace and faith.  Forever examples to me.

Also thankful for promptings from the spirit given to me and to those around us who have been walking on this journey with us.

Especially thankful for Tatum Hope, yes her middle name is Hope.  We wanted to give her an H middle name in case she felt left out when she got older that she did not have an H name.  I felt strongly that she would be the "hope" in our family for a lot of reasons, never imagined it would be for this reason.  She does give us hope every day.  We love our little Tatum Hope.

Awww Sleep, Precious Sleep

Tatum Update:  Tater bug has had like three good days in a row!  She slept good last night and she was very restful today.  Seizures were quite calm.  She is a real trooper.  Because she slept last night, I was able to sleep a little.  I felt like the energizer bunny today.  I got so much done.  While she was awake I was able to sit with her and while she slept I hurried and got the things done that I needed to.   Overall a really good day.
Tatum even came and did carpool with us and she did pretty good in the car.  I only suctioned her a little bit today.  While she sleeps, her breathing is great.  So weird.
Tuesdays are always a little crazy.  The kids have piano, I drive carpool, we have Young Women's, it's just a wild afternoon/evening.  This Tuesday was no different.  Luckily my good friend brought us a yummy dinner, so that was taken out of the equation.  We all got where we needed to be and we had a pretty successful day.  My new visiting teachers came today.  I was sad to be reassigned to new ladies, because I loved my other two great ladies, but I was excited to get to know the new ladies a little better.  One I have known since we moved here and the other lady has lived in our neighborhood for 2 or 3 years.  We actually have a lot in common, and we had a really great spiritual discussion about different trials that we are all experiencing now and in the past.  I think that our RS presidency was on to something!  There is often great inspiration in things that are done in the church.  Hopefully we will all learn from one another and help lift one another's burdens.
I was really grateful for sleep today.  I had forgotten what it felt like when your body feels sort of rested.  It  was amazing.
I am  grateful for good ladies that I get to work with in the Young Women organization.  Their spiritual depth and commitment are inspiring.    They are just good women, daughters of God.   They have all been so good to me and my family.  I can never thank them enough.  Also very thankful for the sweet girls that come faithfully and allow me to be a part of their lives.  It lifts me to be around them and their delightful spirits.

It seems like not a day goes by that at least a few friends check on me, stop by, etc.  It is amazing.  It's almost like they have worked out a schedule, but I know they haven't.  They are just led by the spirit and their "womanly intuition" on how to be instruments in the Lord's hands.  Truly grateful for that.
Really grateful for a daughter who sat down with her younger brother today to help him pick classes for High School.  He would have never listened to his ridiculous mother!
Grateful for Hilary.   When I got Tatum dressed today, I put her in an outfit that I have never put her in, but it was Hilary's when she was a baby. (I had to break out some more wintry clothes because it was 30 degrees when we woke up this morning!!!!! What the heck?)  Hilary looked over and said "Aww, Tatum looks pretty".  What a dear sweet sister she is.

Two cooking miracles today: I made cinnamon rolls for our activity tonight.  I made up this enormous thing of dough and I was finishing kneading it on the island in our kitchen.  The big bowl I was going to put it in was on the counter across from the island.  Without thinking I picked up the dough to transfer it.  Instead of just moving the bowl to the island I decided to just carry it to the other counter.  When i got half way across I realized that the dough was a little more loose than I thought and I could feel it slipping.  It was like slow motion.  PLEASE don't let me drop this dough!  I made it to the bowl, just in the nick of time.  Miracle.  Second miracle was that I was sure I had enough brown sugar until I opened my Tupperware container and realized that I didn't.  However, I had a brand new bag right behind the Tupperware!  Yes.  I love when things like that happen.

 I just thought that Tatum looked so pretty and peaceful sleeping today.  She just seemed comfortable today.

Steady as she goes

Tatum Update:  She had a really good day today.  Slept well, not too gurgly, not too much suction required. Remarkably "normal" day. She seems steady for now.  Knock on wood, right?  She is such a sweet heart.  Still tries to smile even though you know she feels like junk.  She continues to amaze.  The human spirit is strong in her.

I wanted to take a few minutes each blog and list a few things that I am thankful for.  I think it keeps us in check so we are remembering to see the Lord's hand in our lives continually, and I also think that sometimes at the end of the day when I evaluate what I am grateful for some of the things are hilarious!  So i thought I would share cause I think that you can all relate.
Today I was grateful that Tatum rested well through the night and then took a great nap so I got a lot of projects done that I had hoped to accomplish and I got to relisten to almost all of Saturday mornings session of Conference.  I love technology!
I was super grateful for Hilary's new Dora the Explorer microphone that I randomly picked up for her birthday.  It sings all of these songs and when she pushes on the button her voice can be heard singing along. It is seriously hilarious.  I could watch her all day.  Tonight she pushed the button and one of the songs started and she said "Mommy dance!"  How could I not?  She will truly be a light during the dark days that will come.  Love that little girl, a true gift from God.
I was really grateful for Heidi today.  She is 12 and is very intuitive.  I was making dinner frantically, because Tates was getting sad.  Heidi went and sat next to her in the kitchen for about 30 minutes so i could finish dinner.  She is so tender.  Grateful for a sweet daughter, and big sister.
I talked to a few of my doctors today.   I am so grateful for their knowledge and their belief in Mothers.  They are good people that love me and my family and I am so grateful to have them caring for our sweet Tatum.
The last thing that I was really grateful for today was that when I was in one of the bathrooms I noticed a glob of something on the floor.  Before really thinking it through I instinctively bent over and scooped it up with my finger.  It looked suspiciously like poop.  What made me scoop it up with out investigating first, I will never know.  Luckily it was chocolate!  Not that I tasted it, but I could smell it.  Ahhh so grateful.  Tender mercy of the day.

Night out on the Town with Tates

Well, Tatum has been a little naughty.  She went to bed finally this morning at around 7am.  I turned her over to Lance around 6:30am.  Poor little dear.  She has just been seizing so much that she can't go to sleep.  I am making this a quick post because she is currently sleeping:)  She has been so gurgly and seizing that she has just had a terrible day.  I messaged our doctors to get some advice and my Pediatrician said we could go to the hospital to have her deep suctioned.  I was all about that.  She sounds like she smokes 3 packs a day right now.  So Lance and I loaded up Tates and her accessories, this time we included the oxygen monitor and the suction machine, new additions to the travel, but necessary.  She did fabulous in the car, very unusual these days.
We arrived at the hospital got checked in, and we were waiting for the respiratory therapist to come and get us.  Lance wanted to know if we got some sort of buzzer like at Texas Roadhouse.  He never loses his sense of humor!  As we were waiting we saw a friend (our insurance guy for like 20 years).  He hasn't seen us since all of this has happened so we got to fill him in on the story.  It was fun to meet his wife.  Seems weird to be friends with your insurance guy, but we have had a relationship with him since Lance graduated college.  That is a really long time.  The respiratory guy came down and off we went to our next adventure.  We got her all settled in the room and we started explaining what was going on with her.  He listened to her and said that the trouble was definitely upper airway, not in her lungs so that was good news.  He got her all wrapped up in a little blanket and said "I hope she doesn't fight me too much", I responded, "no worries, she can't move her arms, or anything".  It is times like that when it really hits me what this stupid disease has done to her sweet body.  Grrr.  Turned out that I knew this man's sister.  I came in when she lost her last baby and she is a volunteer on the NICU.  Small world.  The Resp. Therapist took a few minutes and did some suctioning, got some stuff out of her nose, but not much else.  We were pretty disappointed with the results.  He said it is all in the back of her throat and we could try some other things at home.  Really?  Can't wait to get this bill!  She still sounds like she has rocks in the back of her throat.
We then went to the NICU to mail some things and the therapist suggested that we talk to one of the doctors on the NICU about some other ideas to decrease her secretions.  We didn't get to see him, but I left him a note and he called me with a great idea.  I will let you know if it works.  I was very encouraged after talking to him.
After we left the NICU we went to Labor and Delivery to see if any of my buds were working.  We visited for awhile and got Tatum in her jammies and got ready for the ride home.  So good to see my friends at work.  What a great group of ladies.  Several of them were there the night that Tatum was born!  I miss seeing them all.  As we were talking all of a sudden I remembered that we had unhooked Tates from her feeding to do the suctioning and hadn't hooked her back up.  Then I remembered that I had never turned the pump off.  So we were strolling around leaving a trail of breast milk (liquid gold as I call it) all through the hospital!  Most of it was just on the stroller, but come on.  Who is running this show?  You would think that I was working on 3 hours of sleep a day.  Oh maybe I am.  We fixed that all up and got on our way home.  What a crazy day.  She fell asleep in the car, which she never does but I was hopeful.  We got her all settled in for bed and she is snoozing right now!  I can feel a few hours of sleep coming my way.
I am so grateful that we have technology that allows us to be at home with Tatum.  With Trevin we were in and out of the hospital a lot because we did not know what we were dealing with.  This time around it feels good to be at home.
I am also grateful for technology that allowed us to watch conference for the past few days in our pajamas!  What a blessing.   I feel rejuvenated.  Conference always leaves me wanting to do better.  To be a better wife, mother, friend, leader, etc.  There is much for me to do and improve upon.  I will start tomorrow!  I did hear one great thing.  When Elder Christofferson quoted the lady that said "you are more important than a house" was he announcing that we don't have to clean our houses anymore.  Please Please Please let it be that.   I have waited a long time for that revelation.  Just kidding.  I think the reason that really stuck out to me is because it is true.  I need to concentrate on the really important things like spending time with our kids. Of all people we know how precious this time is.

My cute friends at Utah Valley Hospital.  Changing Tatum on her makeshift bed.

Hilary turns 3 and Tatum gets 2 Teeth!

Tatum update:  Tatum had a pretty good night.  She was fairly calm all night and slept until about 4am.  Then she fell asleep some time between 4 and 6.  I fell asleep holding her.  I got up around 6 and we did her morning routine.  Got her settled and then Hilary woke up.  I was going out for a run with the dog and I was trying to talk Hilary out of eating a cupcake for breakfast when she said that she wanted to come running with me.  So off we went, Hilary, me and the dog.  It was a beautiful morning.  I miss going running with both girls.  My neighbor used to push Hilary and I would push Tates.  I really miss that time.  Tatum had a pretty good day.  She was pretty serious, but she had some good calm times.  We took some really cute pictures just sitting around watching conference on TV.

Cute big brother...

 You can barely see Tatum's new top teeth poking through...

Big Sis...

After the morning session of conference was over we had lunch and then we began with the birthday festivities.  When you asked Hilary how old she was she held up all five fingers and said I'm four.  Then we had to correct her and tell her she was three.  Adorable.  Here are some of the highlights of the birthday girl day:

Holding hands with Tater bug...

Showing off our new matching Dora pajamas...

Vamanos, that means let's go.... for all of you Dora lovers out there.

Blowing out her candle.

Her card says Three!

A Dora microphone.  It plays songs and you can talk into it.  She sings along with the songs.  It is adorable.

Overall a really good day just hanging out with the family.  While the guys were gone at their evening meeting my friend and her son who is Holden's age came over.  We made dinner and played a game.  It was super fun and comfortable for Tatum to just be able to be home.  Conference talks on peace, enduring to the end, doing our part.  What a great day of listening and feeling uplifted by the spirit.    

Helping Hands

Tatum update:  She had a HORRIBLE night.  I can't even explain it.  It was one of her worst nights.  She went to bed pretty good but she woke up at 1:30 and was seizing constantly.  I held her until about 6:30 am. I was dozing in and out.  Having that weird sleep where you wake up and can't lift your head because you fell asleep sitting up and your neck is all cranked to the side.  So I don't even count that really.  On top of horribly uncomfortable sleep I was having weird dreams because I was really scared that she was going to die.  I just kept thinking about Hilary and Halea and the fact that their birthdays are just days away.  I don't want them to have horrible memories of their birthdays.  I was a little delirious.  I think that all of these little episodes are preparation for when Tatum really does leave us.  It is a slow preparation for my heart.  I hate it that we are preparing for such a thing.  I thought a lot about all of our mortality today.  Really we are all slowly dieing, right?  Uplifting thought I know.  It makes me feel better to think of it in these terms because then if seems more normal and natural, which it is.  It is just hard as a parent to wrap your mind and heart around.   I did end up giving Tatum a little extra medication (sounds like I needed some too:) to see if I could get her seizures to settle down.  A few hours after giving the medication she did get into a good sleep pattern and was able to rest.  I took a few hours to rest also.  Luckily Lance stayed home today so I could rest.  When I finally got going this morning, I was surprisingly not  tired.  Tender mercies!   The rest of the day was actually pretty good for Tatum.  I only suctioned her once for just a little bit.  She is totally resting pretty calm tonight.  Hopefully it will be a good night.

The good thing about her sleeping weird was that she woke up later to get her morning routine.  Hilary was awake and so she got to help this morning, one of our helping hands today!:

Hilary helped put lotion on Tatum today.  She put a huge glob on the top of her head, so her hair do was a little crazier than usual:)  She also got to get her sponge for her mouth wet and throw things in the garbage for mom.  If you look close you can see Hilary's horrible sunburn from doing yard work yesterday.  Oops.  I always forget to put sunscreen on in the spring.  It's not hot so I forget there is a sun.  Darn it.

Tonight I had to run out and do a few errands so I stopped and got Cafe Rio for all of us that were at home. I hadn't been there for a long time.  It used to be a favorite of mine and Lance's for date night.  When I walked in to pick up the food it was a really weird feeling.  Like I was walking into a former life.  It felt so abnormal to me.  Like I didn't belong.  It is hard to explain.  I was happy to go home and eat and do the things that are "normal" to me now.  I don't know how I will ever re enter that life again.

When I got home I went to empty the dishwasher and Lance had already done it!  What a good guy.  I was excited because that meant I could go sit with Tate's a little sooner.  Then the dog peed on the floor, so I got to clean that up instead.  Grrr.  I think she is mental.   She is for sure making me mental.  I must add, however, that she has been a great little friend for Hilary.  I know that sounds weird, but they really entertain one another sometimes when I really need them to.  I will have to tolerate some of her psychotic behaviors.

I want to thank all of the friends, neighbors, family etc. who have been our helping hands these past two months.  I can't believe the service that has been rendered in our behalf.  It is truly overwhelming.  I am so thankful for the tender mercies that have come from our Heavenly Father through all of you.

I am excited to hear the counsel from our Heavenly Father tomorrow and Sunday through the talks that will be given.  I love conference time.  The words are always so inspired and personal.  I know that we will find comfort and answers n the words that will be spoken.  Our family is in desperate need of comfort at this time.  Conference could not have come at a better time.