Saturday, March 30, 2013

A Time for Miracles

Tatum Update:  Don't get excited by the title, Tatum is not cured!  Miracles come in different sizes and sometimes we have to really look for them and I will cover that after the health update.  Tatum has had two really good days.  She has been fairly calm, seizure wise and she has had a lot less secretions  I think I only suctioned her twice yesterday and once today!  She also slept until 7 am this morning (miracle #1).

I feel like a new woman after several hours of sleep.  I could probably have run a marathon today, but instead we did an Easter Egg hunt and cleaned the house and went to the Young Women Broadcast in Salt Lake with my girls.  It has been a great day.  We were able to clean up the yard a little (miracle #2), clean the house a little (miracle #3) and then we had the cousins come over for an Easter Egg hunt (miracle #4). When I was buying the candy to fill the eggs, I didn't remember until about half way through that we have 3 little cousins that are allergic to peanuts and one is also allergic to eggs.  I accidentally only bought peanut free items (miracle #5).  We had so much fun visiting and Tatum tolerated everything really well.  Lance brought her out on the back porch swing so they could both watch the kids hunt for eggs (miracle #6)  The weather was gorgeous (miracle #7)  After everyone left I was sitting with Tatum and I was thinking about the Young Women Broadcast and I really wanted to go to Salt Lake with my girls.  I was really nervous to leave Tates for that long.  Not that I didn't trust Lance, I didn't trust Tatum!  I was just worried that she would have a breathing episode.  The more I thought about it the more I was convinced that I should go.   We talked about it and after Lance shot down my idea of sneaking Tatum in to the Conference Center, I decided that i should go.  Heidi brought her friend and we all went to meet Halea's friends and two of their mom's.  We all loaded into the BMW (big mormon wagon:) or the swaggin' wagon as we affectionately call it.  It was great fun.  I was a little nervous to be far away, but I was so glad that we got to go.  There are always blessings to be had when you are in the places that you should be (miracle #8)  The talks were amazing, and the spirit was so strong there.  There is certainly something about being there hearing the music and feeling the tangible spirit.  I felt so uplifted and renewed as we left.  I love the sweet YW General President and her counselors, and of course President Monson and his counselors are amazing.   I called Lance when we got out and he said that Tatum did great.  We made it back to Lehi and went to dinner.  What a fantastic way to end a rather fabulous day surrounded by good family and friends and celebrating this beautiful Easter season.

When we got home tonight I was able to make roll dough for tomorrow (miracle #9).  I know that there is no explanation for today's events except that Heaven shined down on us.  I am so grateful for the goodness in my life.  I know that if we choose to see the joy around us we will find it.  I am lucky that for most of my life I have possessed the gift of being able to see the positive things around me.  During times like these it is imperative for survival to be able to choose the joy, or the despair will gobble you up and leave you crushed. My spirit can triumph over this heartache, this I know is true because of the empowering gift of the Atonement.  Easter truly is a time of Miracles, big and small.

Tatum and Dad on the porch swing
 Tatum, excited for her Easter Basket and new Easter outfit.
Hilary, grumpy about something.
Cute sisters.
Lucky mom with two beautiful daughters!

Friday, March 29, 2013

Love of Home

Tatum Update:  Tatum likes to be home, I do believe.  Whenever we put her in her car seat, she starts crying and bubbling, which means secretions.  She is just not happy to go anywhere.  Does she not know her mother?  I am the biggest goer.  She is so silly.  We are going to take it easy the next few days, so we can build up her energy for three hours of church.  She has had several pretty bad "episodes" with her breathing, so I really don't feel comfortable leaving her.  She is teaching me some very valuable lessons!  What is really important: do we really have to go anywhere today, how fast can we be, can it be done at midnight after she is asleep?  Questions I ask myself now before I do almost anything.  My life is extremely different than it was 6 weeks ago.   I thought it was slow before, waiting for Hilary to do EVERYTHING by herself and then trying to bring little Tate's along too. Those were slow times, now it is like we are also walking in quick sand!  There are still so many great things about our crazy life, I can't complain.  The fact that we have been able to keep Tatum at home and out of the hospital is such a blessing.  I don't know what we would do if we had to be in and out of the hospital like we were with Trevin.  Our living room does look like a hospital room, but that is a trade off I am willing to make to keep her home.

My mom was in town for a few days so we had a mock birthday party for Hilary (since her birthday is in a week) and took the kids swimming at her hotel last night.  The kids had a great time, Tatum did not have a great time and instead went into a total tailspin.  Apparently she did not enjoy the swimming expedition.  She really had a rough evening.  I get really nervous when she does this because she gets so stressed and tired from it.  As soon as she gets her jammies and her night time meds, she seems to calm down and go to sleep.  I guess that's true for all of us, right?  I think I need to get some better night time meds:)

Last night after Tatum had such a rough time I prayed so hard to know how to care for her better so that she can have the energy she needs to feel good.  I want her time with us to be as happy as it can be.  I really was emotionally exhausted going to bed last night.  This morning I really felt like she needed to just be at home and rest.  Tatum has a love of  home.  She was pretty happy all day.  She was able to get a good afternoon nap.  This evening was so much smoother than the past few.  She did so much better.  What an answer to a mothers prayer.  I know Heavenly Father is listening.   I also know that He can't give us everything we want.  I also know that we need to be specific in our questions.  I am grateful for that communication.  I am sooo bad at it, but I am trying to get better.

The past week or so I have been feeling like our family needs to regroup.  I think that the kids have become "used to" Tatum's condition.  Meaning that they are continuing on with their daily activities, as they should and we want them to, but I think that they have forgotten that I can't do everything that I used to do.   I had several times today that I was reminded of this fact.  I couldn't go outside with Hilary to blow bubbles because it wasn't a good time for Tatum.  Halea is going up to the General Young Women's Broadcast tomorrow.  She is going with another great friend and her mom.  It breaks my heart to not be able to go, but I can't leave Tatum for that long.  This is all, unfortunately, temporary and so I am fine with it.  It just makes me feel sad.  There is no solution for it, it is just life right now, and that's OK.  I would not sacrifice any of the time I have to spend holding Tatum and memorizing her face and her toes and her hands and her teeth and her eyes.  I can go to the broadcast next year and I can blow bubbles tomorrow while Lance sits for a bit with Tatum.

I will forever be grateful for this time I have to be Tatum's mom.  There is something special about these kids that don't have to stay here on earth for very long.  I just want to soak it all in.

Here are some pictures from swimming.  Notice how excited Tatum is:)


Wednesday, March 27, 2013

The New "Normal"

Tatum Update:  Tatum overall had a good day.  It started out fine, her regular 4:30 am wake up time.  I do not know where she got it in her head that this is when the day should begin, but she does and so we just go with it, because what Tatum wants Tatum gets:)  We worked through the routine and then she usually goes for about a two hour nap so I can go on warp speed and straighten the house and get some things done before she and Hilary wake up again.  She took a little longer than normal getting back to sleep, turkey.  Then she was pretty happy when she woke up.  I was able to talk Hilary into the sort of matching outfit so I could take a cute picture, miracle!  The day was off to a good start.  So good that I decided that we would go run some errands.
 My mom is here so I could leave her in the car with the girls while we went to a few stores and other errands.  We got to Pleasant Grove and Tatum started cranking a little.  She does not love her car seat.  The more she cried, you guessed it, the more the secretions multiplied.  I could hear her gurgling.  I pulled over and gave her a quick suction then we carried on to Provo.  We did a quick errand there.  I decided to stop off at my doctors office so that they could hear her because she sounded horrible.  I wanted them to see what I meant by SECRETIONS!  When I walked in the receptionist was like "Wow Tatum, you don't sound so good".  We got to a room and she sounded horrible and her sats were at 83.  I got her on the table and suctioned her out really good and by the time the doctor came in she was at 95.  So they really didn't get to hear what she sounded like.  Grrrr.  They really didn't have a solution either.  I think this is part of our new normal, I thought.  No one will want to sit by me at lunch when they hear us suction our sweet delicate princess.  Oh boy.  By the time we were done with our visit her breathing sounded better than mine!  We went home and I started making dinner in various stages. (That's right, I said I was making DINNER, all by myself)  Tatum was pretty cranky this evening, just not quite herself.  I hope this is not her new normal.  She did seem to have pretty consistent ticking today, so hopefully it will mellow out tomorrow so she can feel better.   As the evening progressed, I felt a wicked headache coming on.  The kind that makes you feel like you are going to throw up.  It is still just killing.  I imagine there are lots of days that Tatum has a total headache from seizing all day.  Poor little thing.
I just finished reading Stephanie Nielsen's book, she is the lady that is from Provo and her and her husband were in a plane crash and she was burned over 80 percent of her body.  It is an excellent book.  I felt like I related with her in some way.  I do not compare my trial to hers in any way.  Hers seems so much harder.  I just loved the way that she missed the mundane things of motherhood that we all complain about like doing laundry, cleaning, tying little people shoes and making dinner.   She talks about how she wished that she could do those things herself, but instead she had to watch her husband try and do everything for such a long time.  I feel like I am incapable of doing so many things that I used to do, but I am trying to be OK with it.  One day I will be able to do everything again, and I won't want to be able to, is that clear as mud?  I just know that our time with Tater bug is short and as hard as it is to watch her struggle I just don't want to move past this new normal into the worse new normal that lies ahead.  Today when I was getting her dressed and I realized that I had a little dress for Hilary that kind of matched I remembered a discussion that I had with Halea a month or so before Tatum was born about how I was going to have to really hold back and not buy all of these cute matching outfits for the two of them.  It makes my heart hurt to know that Hilary won't have that little sister to match outfits with.  I think that my raging headache is getting the best of me.  I better try and get some sleep while my alarm clock is sleeping too:)

Monday, March 25, 2013

Conquering Costco

Tatum Update:  Tatum had a great night.  Her sats were 98 all night!  Woo hoo.  She slept all night!  Double Woo hoo.  When she woke up her secretions seemed way decreased.  She sounded much less gurgly (my own descriptive word, it paints a picture right?)  The morning went well.  Hilary only had a few small outbursts and 2 year old moments while getting ready.  She did insist on wearing pants under her dress today.  I think we have lived in Utah too long:)  We made it to the doctor only 15 minutes late.  I was feeling pretty good about that, after packing all of her "accessories" and Hilary and myself, i would say 15 minutes late  is actually early.  The visit was good.  We talked mostly about medications and levels and how to mix things up a little when she has bad spells.  We have a liver clinic at PCMC in two weeks.  There we will find out how her liver is reacting to everything.  Keep our fingers crossed that all is well.  Then a few weeks after that we go to her G-tube follow up.  Feedings are going great for her.  I hate to type that outloud, in case she is listening.  We don't want to give her any crazy ideas! Let's keep one thing good!  Tatum has kept her sats good all day, and I only suctioned her twice today and we were able to move her oxygen down from 3/4 liter to 1/2 liter.  Great strides today.  We haven't even been monitoring her breathing because she sounds so great.  Go Dotera.  I will apply these oils every day if they will help her breathe like this.  I wonder if she was having allergies or a cold and they have helped with those symptoms.  Whatever it is we are grateful.

After the doctor we went to get some more portable oxygen and shop at the Home Health store.  Don't be jealous.  Then we went to a friends house to visit for a bit.  We came home unloaded and did a few quick things at the house and then we were off again.  I needed to go to Costco and IFA for some fertilizer for our sad lawn.  I was going to wait until the kids came home, but i just wanted to be able to do it on our own like we used to.  So we loaded up.  Poor Hilary is scared to death to get in and out of the van now ever since she fell out of it a few weeks ago, so she is slower than tar (she used to be slower than mud, now she is slower than tar!)  What else do I have to be doing, so I try to be patient.  We were finally loaded and on our way.  We ran a few quick places and then off to Costco.  As I pulled in to the parking lot I got a little nervous.  It never fails that it takes me an hour and a half to get through Costco because I always see a million people that I know, which I love.  I love talking and visiting, it is in my very nature.  I was just a little nervous today.  There are plenty of people who I know that haven't heard what is going on with Tatum and I just wasn't sure if I could face them today.  There must have been a total bubble around us today.  I only saw one worker that I knew and we usually just wave and exchange hello's. So I didn't have to face any uncomfortable situations or anything today.  It was a miracle.  Yet another prayer answered.  There have been so many.

Along the lines of prayers being answered.  I am not sure if I have already shared this, so forgive me if I have.  I want to make sure that I document as many prayers that have been answered so that I have this history to look back on when I am in the depths of my sorrow.  So that I will remember the love that Heavenly Father has shown me and my family every step of the way through this difficult time.  Probably two months before Tatum had her big seizure, I began having spiritual confirmations that she really did have what Trevin had and that her seizure event was coming.  I had a pit in my stomach for most of those two months.  Up until this time I had been praying fervently for her to be well and not affected.  I didn't want to do this again, it scared me to think about her fate.  About that two month prior mark I began praying for the circumstances of her event.  Meaning I started laying out how I wished that it would happen so that we could handle it better.  I prayed that it would be during the day so that I would be clear minded and aware of what was happening.  That our kids would be in school so they would not have to witness the seizure.   That we could have our doctors there with us.  That they could get an IV and that she would not have to be intubated.  The list went on and on.  As you go down my check list, every one was answered.  It was as if it were orchestrated from above.  I am so grateful that I asked for the things that I needed and that I was specific.  Such a testimony that our Heavenly Father hears us, knows us and would do anything to help us know that He is listening.  The week before Tatum went in to the hospital the first time I had a dream that she was having a seizure and I was running around with her in my arms trying to show her to the doctors and yelling help trying to get them to help me.  I woke up terrified.  I went to the Temple that morning and had an amazing experience there.  The dream was certainly a warning of things coming, but I was able to find such peace in the Temple amid the impending doom that I was feeling.   A good reminder to me that there can still be peace inside of the storm, we are in charge of finding it, inviting it surrendering to it.  Most days I do find it.
Today one of the things that the doctor said was that Tatum would slowly become less responsive to us.  Less smiles, laughs, looking at us, she would become more sleepy.  That really made my heart sad.   I live for her smiles, and her sticking out her tongue and looking at each person who enters the room.  I pray that he is wrong.

Sunday, March 24, 2013

Everybody Loves Tatum!

Tatum update:  Not our best day.  In fact we took turns going to church today so that Tatum could stay home.  She has just really been struggling with her Oxygen.  We did not want to haul yet another piece of very noisy equipment to church so we opted to keep her home and let her rest, which she did not.  She stayed awake for most of the day just struggling.  If she is in just the right, weird position or being held by mom she seemed to not struggle as much, so I pretty much spent a lot of time on the couch today:)   We go to the doctors tomorrow so hopefully they will have some suggestions to help her get rid of her secretions a little more efficiently.  I have several suggestions and questions.  I will let you know how it goes, doctors always love suggestions right? (actually my doctors are wonderful and truly listen to mothers thank goodness)

The reason for the title is self explanatory.  Everyone loves Tatum and is drawn to want to help her, and we could not be more appreciative.  Just today we had six people offer helpful information or service of one kind or another. (I had to change the number from 4, to 5 to 6 because I kept remembering more people!!)
It is unbelievable what a network of people she has looking out for her and being instruments in the Lord's hands.  I have focusing my prayers on helping us to know how to make her life here comfortable and happy and peaceful and fun.  Can't live in the Walker home without a little fun, right?  I really want to be able to take her places like the park, or on walks, but the more machinery that is required, it is getting more and more unlikely, so I have really been hoping for some relief for her.  I feel very tied to her 'Sat' machine that tracks her Oxygen level because she has been so congested.  You can't really go anywhere with that, it's loud and obnoxious and heavy and bulky and everyone will panic when they see us suctioning out this cute little baby on the slide!  What a sight.  I am hoping that we can get her to a point where that is not necessary.  We had several visitors today.  Good friends who brought some essential oils for us to try, which I had considered already.  I hope that they can give her some relief.  I am happy when people act on their inspirations, even if they feel weird about it.  I hope that statement doesn't open up a whole flood of weird suggestions!  Just kidding:)  I am so grateful for good friends who care.

I shared a thought in one of our meetings today that I know that the Savior suffered not only for my sins, but for my infirmities and my sadness so that He would know how best to comfort me during the hardest times in my life.  There have been so many prayers answered in ways that could only have been accomplished through inspiration from a loving Savior who knew what I would need right at that moment.  He did it so He could help me in the most personal way.  Unbelievable.  And everyone around me is in on it and they might not even know!  That is the part I like the best.  Sneaky.

One of my good friends took some adorable pictures of Tates and the family and so I thought I would share a few of those tonight to put a smile on your faces.  She really is beautiful, if I don't say so myself.  Sorry, I couldn't just pick one!

Saturday, March 23, 2013

Are You Kidding?: Part Two

Tatum update:  She seems pretty steady right now.  She still has her moments of congestion, but with our new found security of the suction machine, we are able to help her.  It took several calls and deliveries of supplies, but I think we now have everything that we need.  Tatum still has her moments of being super smiley and even laughs occasionally.  She still likes to do her stretches and watch cartoons.  I can only imagine how boring her life is.  In the evenings when we make dinner or eat we move her in the kitchen so she can be a part of all of our chaos.  I think for the most part she likes it.  She is a real champ.

Late Thursday night, or early Friday morning somewhere in that blurry time, I realized that I was not feeling well.  As my day started early with Tatum, it was apparent that I might have a flu bug!  Are you kidding?  I cannot get sick.  I tried to soldier on through the morning routine.  I was able to help get everyone off to school and Tatum settled down, then I crashed.   I did not even do a quick run, that is how sick I was!  Lance came home and said that he would stay home until 1:00 when the other kids got home, then he had a meeting that he needed to be to and then he would come right home.  I gave instructions to Heidi and Hayden to be with Tatum while I laid down for a little longer.  I would wander out and check on her and then crawl back to bed.  At about 3 I decided I needed to get up and start disinfecting the house.  Heidi helped me wipe door handles and spray counters and spray lysol so the house would smell better:)  About 5 Lance walked through the door looking very sick!  Straight to bed he went.  Two down 6 to go.  Knock on wood, no one else has come down with the gamboo.
Friday was so horrible because I didn't want to touch or breathe on Tatum, so I didn't hold her all day until Lance stopped at the hospital on his way home from his meeting to grab me some masks.  That night I sat down and held her.  Oh how I had missed her and the way she fits so perfectly in my arms.  I feel like time with her is so precious I can't waste it being sick.  Glad this was a quick flu.
Today I was flipping through some pictures on my camera to free up some room on my memory card and I came across a bunch of pictures of Tatum right before she got sick.  My heart skipped at how different her body is in just 6 short weeks.  I was so sad for her.  She must feel so trapped.  I know that she is comforted during her trial, as we all are.   It was just the mommy in me wanted to make it all better for her.  I hope that we are making all of the right decisions for her.  I hope she feels how much we love and respect her.

The picture for today is from today.  I came around the corner and Hilary had crawled up next to Tatum all by herself.  Doesn't seem like a big deal, but there are a lot of tubes and wires to navigate, so at first I was worried and then I ran to get my camera.  What a sweet sister moment.  Love that Hilary.

Thursday, March 21, 2013

New Piece of Equipment

In any other context a new piece of equipment would be exciting.  Maybe a new lawn mower or piece of audio or stereo equipment.  Nope it's a suction machine!  And it lives up to it's name, it sucks:)  One day you don't need a feeding tube and the next you do.  One day you don't need oxygen, the next day you do, etc.   It is just how this dumb disease is.  You just don't know what is around the next corner, nor do you want to know, really.
Today was such a fabulous day.  We had a friend come visit.  While she was there I was able to take Hilary on a little outing to Target to pick up a few things.  Tatum was happy and doing good all day.  Then about 4:00 she just sounded really congested.  She has done this a lot so I wasn't worried.  I call them "episodes".  She always does it around the same time of day and pretty regularly, so i wasn't too concerned.  I just held her and tried to pat her back.  I noticed that it wasn't subsiding at all, so I put on her monitor so I could monitor her breathing a little more closely.  It was making me a little nervous, so I called my doctor and asked them if we qualified for a suction machine and what else I could do to help her.  They ordered the machine  for us, but it would not be delivered until evening.  I called a friend from our neighborhood who is a nurse, and he was leaving work soon and said he would come by ASAP.  I called several other nurses in the neighborhood, but luckily none of them were home!!!  Don't they know that they are at my disposal at all times.  (I hope you are sensing my sarcasm)  I was feeling really nervous.  If I kept her on her side and patted her side, she did pretty well, so that is what we did for the next 30 or so minute until our friend came.  By then Tatum had settled down considerably.  He looked her over and listened to her and gave some advice as to how to proceed, then they took Hilary for a little play date.  He was like the good  country doctor of old, taking care of our every immediate need.  

Things have calmed down quite a bit, and who knows what tomorrow will be like?  She still managed a lot of smiles tonight, whatever Tatum.  She is such a delight.  This day brought a lot of hard emotions to the forefront for me.  I admit that I am scared.  I am happy with how things are right now and I wish I could stop time from slipping away, but I know that it is.  I love the song by Diamond Rio I think it is called "One More Day".  I have heard it almost every day on the radio since Tatum got sick.  I don't know if they just have it on the play list every morning right when I am getting ready or what.  It talks about having just one more day with someone.  It puts a lot of things into perspective.  What insignificant things  in our lives are we doing that take away precious time with the people we love?  Where are we basing our happiness?  Just some things to think about, right?  Myself very much included.

Last but not least.  We are going to be total fatty's by the time summer gets here.   People are so so so kind. Tonight I was looking at all of the foods that we have been so blessed with and I said out loud while looking at it all "where are we going to put all of this?"  My sweet Heidi replied "People are just trying to be nice".  I told her that I knew that, it is really just so tender how people have rallied around us.  We are sooo lucky. Oh, if you are in our area and need dinner, please come by and bring a friend or a doggy bag:)

Wednesday, March 20, 2013


Tatum seems to be feeling much better today, except now she has diarrhea from the antibiotic!  Perfect.  Poor little thing can't catch a break.  I was gone for a few hours this morning and then again for a few hours tonight and it was way too much.  I missed Tatum, and the rest of the family.  I just don't ever really want a "break" from her.  I could sit with her all day and soak up her sweetness.

I have to take a second and thank people for commenting on the blog.  I love to hear the kind thoughts from people.  I have not figured out how to reply to the comments, I know that shows my age:)  So here is my blanket thank you.  It has been really fun to hear how this experience is touching other people's lives.  That is one of the purposes of the blog is to allow people to learn and grow through this with us.  So thank you, it means a lot that people are reading and laughing and crying with us.

Tonight was our Relief Society birthday celebration.  It was lovely to be around the wonderful women that live in our neighborhood.  One of the ladies had done a cool video with video and pictures of the Relief Society sisters.  I got a little emotional because I have felt each of those women and their families praying for us, and serving us.  It was very humbling to see all of them flash up on the screen.  They truly have been angels through this entire journey.  I love each and every one of them, and it was nice to spend time with them tonight, even though I missed out on a little Tatum time and I ate two cupcakes so now I have to run an extra hour, grrr.

Last night Heidi and Hilary were videoing Tatum with Heidi's i-touch.  I have not seen Tatum laugh like this in over a month.  It brings happy tears to my eyes each time I watch it, so I thought I would share it.

I cannot get this video to play, I will keep working on it.  Let me know if you can see it?

Tuesday, March 19, 2013

Are you kidding ?

So Tatum had a really sad night. She woke up at 3am. I changed her very wet diaper and hoped that was why she had woken up. I sat and held her to try and get her to sleep. She just cried, then she would dose for a few minutes, then she would cry some more. At about 5 Lance came out to try and rock with her while I laid on the couch next to them. I was able to sleep for another hour before the morning routine began. Tatum never did get to sleep!  I decided that as soon as the kids were off to school we were going to see the doctor.  Lance stayed home with sleeping beauty so we didn't have to wake her because that is never pretty:).
When we got to the hospital (our pediatrician's office is hooked to the hospital) we went to visit our NICU and L and D friends until we were due for our appointment. It was fun to see everyone.  They treat Tatum like the rockstar angel that she is.  When Dr. Later came in and started to examine Tate's he said her tummy felt fine and he didn't think that was the trouble. Then he looked in her ears and said "we might have a winner!".   Are you kidding me?  An ear infection!  He said it was mild, but because she can't move, it could bug her more than normal. This made my heart sing.  A simple antibiotic and she could be back to herself. Hooray.
Total side note:  the day before Tatum had her big seizure we went for an appt. at Primary children's. On the way home we decided to stop at our favorite Chinese food restaurant to celebrate Valentines day because we knew we would probably not have time to get away that night.   Lance's fortune read "prepare for the worst, hope for the best". Fast forward 24 hours, we were in the hospital administering drugs to sweet Tatum trying to stop her hideous seizure. When Dr. Later was explaining that we may have to put her on a ventilator if the drugs made her stop breathing he said those exact words.  "Prepare for the worst and hope for the best".  Just another, however strange, way that the Lord was telling us that he cared and He was trying to help us in this very difficult journey.  I just know that our pediatrician and all of his staff are amazing and led by the spirit, truly instruments.
I am grateful tonight that I have a good husband that carries out my pillow and blanket every night so i can sleep on the couch next to Tatum, understanding that I can't be anywhere else.  He tries so hard to do little things to try and ease the burden of the every day things so that I can concentrate on Tatum and her needs.  Tonight after everyone was in bed, he said "That Hilary can wear you down, she is like all of the kids combined into one"  I just smiled:)
I know that these past few weeks I have been sustained with strength beyond my own.  Any normal human (even me) would have collapsed by now, and yet I am able to do the things that I need to.  I know that the Savior is offering up his grace to me and my family at this time especially in our lives to help us to not just overcome the pains of this trial but to be forever triumphant over them.  Unbelievable, unconditional love.
Sorry no picture tonight:)

Monday, March 18, 2013

Don't Forget The Siblings

Today was another so so day.  Tatum is still not quite herself.  I think that she has a tummy ache.  I have investigated any other ailment that I can think of.  Today she was sad if I wasn't holding her, which was fine, because that was what I had planned.  She was sad of course until the siblings came home!

Hilary of course was with her all day.  At one point today she told me that "Tatum needs me".  How true that is.  I see the way that Tatum watches Hilary as she runs around like a crazy girl.  Tatum must know that she will only get to spend a little time here with Hilary and she wants to soak it all in.   The two of them must have an incredible bond having so much time in the preexistence waiting to join our family.  It makes me very sad to think that Hilary will understand very little of what is going on when Tatum leaves us.  All of a sudden she will just be gone.  Thank goodness for the Gospel to help us explain to her as she gets older.

Holden, the little sweetheart.  He definitely has a soft spot for Tatum.  He always has gentle kisses and pats for her.  The other day he walked into the kitchen and announced that Tatum had said "I love you" to him.  I think that she did too.  I worry about his soft little heart.  He does have a very understanding heart, so that will serve him well in the months to come.

Heidi, sweet Heidi.  She is always the one willing to sit with Tatum if I need to do something or go somewhere quick.  Her most recent purchase is a Ukulele.  I will often find her playing and singing to her little sister.  Her latest song is "Somewhere Over the Rainbow".  So adorable.  Heidi is always the one to come to my defense if someone is sassy to me.  She is a real sensitive girl.   She has been the one to ask the most questions about Tatum.  I can see that she is scared, and I wish that I could take that away for her.  I just keep trying to bear testimony of the things that I know are true.  It doesn't make the hurt any less, just bearable.

Ahh, Hayden, the tough teenage boy of the family, and the one that Tatum ALWAYS has a smile, a laugh, millions of raspberries for.  Even today she did.  She lights up when he is around.  It is ridiculous.  He can be so sassy to me, walk in to talk to her and he is a total gentlemen.  I know in my heart of hearts that Hayden is part of Tatum's purpose.  I know that she is here to soften his heart and help him to know how to feel the spirit and to remember that feeling after she is gone.  He is a good soul, just has a hard time expressing it all of the time.  She definitely brings out the best in him.  Tonight I went in while he was talking to her and realized that he had put a Steelers Bracelett, that one of his friends had given him, on Tatum's arm.  Thus it made the blog picture of the night:

Then there is Halea:  Halea obviously understands more than the others.  She carries the heavy burden of knowing what is coming.  She is always so disappointed if she comes home from a busy day and Tates is already asleep.  She usually comes home and goes right to the living room to see little Tater Tot.  She and i have had some good cries, and I am sure we will have more.  She has great friends that have been so supportive to her through all of this, for which I am so grateful.  She also has a deep testimony of the Savior and the grace that He offers each one of us to endure such trials in life.  She is a great example to me.

Overall, we are doing fine.  We are trying to live life and enjoy this glorious time that we have been given with our baby daughter.  Tatum is such an example of enduring cheerfully to the end.  We love her!

Sunday, March 17, 2013

Are you wearing green?

It has been a crazy weekend!  We will start with the Tatum update:
She has been having a lot of seizures the past few days.  She was soo good on Thursday for the zoo.  She was just her happy, pleasant self.  Friday morning she just seemed sad, like maybe she didn't feel good and she was just having a lot more seizures.  Her seizures do seem to be like Utah weather, if you wait a little while they will change.  It seems like we waited a long time for them to subside.  They have settled down a bit, but she still just seems a little sad, but who can blame her right?   I am just spoiled because she is always so pleasant. A few days ago I came home and Lance had noticed that Tatum's oxygen was shooting water through down her nose!  We quickly switched to her portable tank and Lance took a look at the machine only to discover that someone (not naming any names, but I think that she has a 3rd birthday coming up) had turned the oxygen down and that there was a kink in the hose!  Poor Tates probably felt like she was drowning.  The very next day Tatum was sleeping and I hooked up her feeding and then I got busy doing household chores while she was asleep, only to discover that I forgot to turn her feeding back on!  It had probably been off for an hour.  I quickly turned it on and hurried and got a few more things done.  I came back to check on her and noticed that there was wetness around her.  I forgot to plug the feeding into her feeding tube!  Holy moly, I hope that DCFS is not reading our blog.  We really do love little Tates, in fact Lance has discovered that she loves the show Yo Gabba Gabba (I am sure I butchered that spelling!)  It is darling how she will totally watch it, and seem interested.  We don't care if she wants to watch TV all day and be a couch p Tater Bug as we call her.  What she wants she gets like any princess should.  Her feeding tube is doing great and healing well, so there are the positives for the week.

This weekend was our youth conference so I was able to go up on Friday night and come home and then go back on Saturday.  I have the best husband who knows how important it is to me to know that Tates is taken care of and that I get to do some "normal" things.  Luckily we got cell service up at Aspen Grove so i could call and check in.  She did great.  Lance really enjoys his Saturday's chilling with Tatum, so I don't think either of them missed me.  When we got home from Youth Conference on Saturday we had some visitors come and we just hung out at home.  It was nice to be home and visit with friends.  Everyone who comes comments on the sweetness that they feel from Tatum.  We definitely feel that too.

Today I got Tatum ready for church and I made sure that she was going to wear something green so that she wouldn't get pinched.  When we got to church I started looking at her outfit, and I think it was actually blue!  I might have a titch of color blindness:)  Oh well, she still looked adorable. (see above)

We have been studying the Atonement all this month in Sunday School and Young Men/Women, and our lessons have been amazing.  I have been lucky enough to be teaching and it has been such a blessing.  I know that the knowledge that we as a family have been given through the gospel strengthens us and allows us to continue to breathe and live and not be crushed by the sadness.  
Today after Church Halea was saying that she really liked a scripture that Sister Hansen quoted in her talk.  She said that she used to think about kids like Hilary when the Lord says that we are to "become like a little child" and it never really made sense, because Hilary can be a little crab apple, but watching Tatum, it made sense to her now.  It is Mosiah 3:19.  Read it if you want to cry!  Halea started reading the verse and couldn't quite get through it.  We had a good hug and cry.  Tatum truly is submissive, meek, humble, PATIENT, full of love, willing to submit to all things.  She is such an example to us.  We love her.

Thursday, March 14, 2013

The Zoo!

As in the real zoo, not our home:)  Although I think we qualify for a zoo most days too.  Today was Tatum's big adventure out.  It was all hinging on how she slept last night and how her seizures were this morning.  She did great.  She slept well, and her seizures have calmed down considerably for now.  So that is her health update, on to the adventures.  (Stop reading now if this stuff bores you)

We had a pretty good morning.  We actually made it to the car only about 15 minutes behind schedule.  I count that as a huge success.  Hilary was excited, and we like to think that Tatum was too:)  When we got to the zoo it was nearly 70 degrees out, so naturally the entire parking lot was full.  Where is that handicap sticker when you need one.  So we had to park a ways away.  It took a few minutes to get everyone situated on our fake double stroller, but once we were loaded it worked great.  We met up with our cousins and the fun began.  Hilary was excited to see all of the, "Really Big Big animals".  She had so much fun and Tatum did really well.  She was pretty smiley through the entire experience:
It was nice to be out doing a normal activity, especially for Hilary.  I want her to be able to do things like all of our other kids did at her age.  With all of Tatum's "accessories" (oxygen tank and feeding tube) I can't believe that not one person said anything weird to us.  We did get a few little looks and smiles that were a little sad, but nothing beyond that.  I remember several times when we were out with Trevin people would ask the silliest questions or have a miraculous story about how their nephew that had a feeding tube is now going to college and everything is fine.  We learned to just smile and say thanks.  I might not be as nice this time, maybe people can sense the mother bear in me?  Anyway it was nice to be out in the sunshine and to see Hilary have so much fun.
It is really hard to think of these two not growing up together.  It was just going to be so much fun to have these two cute little girls to run around together and now poor Hilary will be stuck pushing both of our wheel chairs!  I am sure that her and Tatum made a deal  in Heaven or drew straws or something?

If anyone knows how to freeze or bottle time, let me know.  Today was a great day.  I just wish that we could stay right here.  I would take care of Tatum for the rest of my life,  Her presence in our home is tangible and I just can't seem to get enough of her.  When I am not with her, I am thinking about her.  Life without her is going to be really hard.  But, we do hard things in this life.  It is what we do.  Soldier on and be grateful for what I have been given, it is much

Wednesday, March 13, 2013

Spring is coming!

I think that I am going to separate my posts a little bit.  I will do a little Tatum update, so that I don't forget to let you all know how she is doing health wise.  I will put that at the front so for those of you who don't care to read my sometimes incredibly looong entries you aren't forced to:)  We are all about agency in this family, unfortunately.

Tatum update:  She had a lot of seizures last night and today, so we gave her a little extra meds tonight to see if we can get the poor girl some relief.  She just started to settle down about 10:00 tonight.  Let's hope for some sleep for both of us.  She is still very smiley, she took a walk today and did really well.  A good friend dropped off a new little bed for her that she did really well in.  It is perfect!  She broke out her spring wardrobe today since it reached 50 degrees.  That is about the excitement for her day.  

Compared to the past two days, today was quiet.  We had a little more time to sit and visit with friends and with Tatum.  I have been thinking a little about the future and the pre existence lately.  I try not to think too much about the future because it scares me and makes my heart hurt a lot.  I watch our kids look at Tatum and wonder what they must be feeling and thinking.  We talk a little bit about what will happen, but it is just soo hard.  This is really hard, but I also know that there are a lot harder trials out there.  We have a neighbor who found a brain tumor around the same time that Tatum got sick.  That is every mother's worse nightmare to think about possibly leaving her family.  I can't imagine.  We have several families in our ward that have lost their mom or dad and have left young children to deal with such big heavy emotions.  At least we are both here to help our kids understand and answer questions and bear testimony to them.  Life is just hard.

The other thought I have been having has been about the pre existence.  I know that we decided to be a family together long before we came to earth.  I am sure that when all was being explained to us and I heard that some spirits would only have to come and receive a body and then automatically  receive the highest degree of glory when they died, I said sign me up, in fact I will take two of those in our family.  Then I'm sure I went and told Lance that I had just ensured ourselves that two of our kids would make it straight to the celestial kingdom.   I can hear him shaking his head at my impulsiveness and saying "if it sounds too good to be true it probably is, so maybe we should research that a little before we sign up."  This is just how our lives are.  I impulse and he pays the price:)  I say this jokingly but it really may have gone down that way, right?   I  do know that Tatum waited and waited for her turn to come and have the little time with us that she gets.  She is so pleasant and patient about everything.  She will forever be an example to all of us.  We love the time that we have been given with her.  I can't say that enough.  Every smile, giggle, raspberry, every smell, hand hold is forever etched in our hearts.   Stay tuned for tomorrow, we may go on a little trip depending on how she feels!                            

Tuesday, March 12, 2013

4 Weeks

In some ways it seems impossible that it has been 4 weeks since our world was turned upside down, and in other ways I can't believe it has already been 28 days since we have seen our sweet little Tatum move an arm or leg or hold up her head or sit in her little Bumbo seat.  I can still see it in my mind so clearly.

  Tuesday's used to be a fun day.  We had our fun workout class at the church that I loved and I would bring the girls and everyone would comment on how adorable they were, of course:)  That class was the last "normal" thing that I was able to do with Tatum.  Now every Tuesday ticks off another week of her declining health.  Sorry to start on this sad note, but I had to acknowledge that this was weighing on me today because I woke up with a bad attitude knowing that this was another anniversary of that day.  Because I woke up with a bad attitude I tried to challenge myself to do some things that would make my life feel a little more "normal".  I decided that I would take the girls on a walk all by myself and then go to the orthodontist and drive carpool!  Well, that was a ridiculous expectation of myself.  By the time I got Hilary ready with shoes, potty, jacket, hency (that is her pet name for her blanket), then I started on Tatum.  Transfer the feeding machine to the backpack, change the diaper, get her in her car seat, switch the oxygen to the portable tank, get them both outside, get out the stroller, honestly it was a half hour!  I am not exaggerating.   By the time we got going we had about 15 minutes left for the walk before we went to the orthodontist.  We took a walk which was lovely.  The weather was great and it just felt nice to be outside.  Tatum tolerated her car seat well.  We got home in time to load into the car and run to get Hayden and Holden out of school to the orthodontist.  I was hoping that our friend that used to work at the orthodontist office had called ahead and told them what was going on.  I asked if she would, because I didn't want them to all be shocked when I came waltzing in with a baby who now had a feeding tube sticking out of her stomach and oxygen.  We are quite a sight.  As we were driving to the school I was talking to my niece on the phone and I looked in the rear view mirror to see that Hilary did not look well.  I asked her if she was OK (can you see where this is going) and she shook her head no.  I could tell she was going to throw up!  Our kids have chronic car sickness.  Luckily I had taken our big BYU cup that I always keep in the car out of the car about two days prior.  I pulled over and was frantically looking for something for her to throw up in.  I grabbed the bag that the prescription I had just picked up came in.  I hurdled the back seat to where Hills was sitting in time to put the bag up to her mouth.  It caught the first wave, but she totally blew through the bag on the next wave.  Luckily we had brought the hency:)  It got all over her shirt and the blanket.  We took off her shirt, got to the school and raced to the ortho appointment.  We were only about 5 minutes late.  I thought that was pretty impressive.  I went to the appointment with Holden while Hayden waited in the car with Tatum and now shirtless Hilary.  When I was leaving to go send Hayden in one of the sweet ladies from the orthodontist office asked how I was doing.  Then she mentioned she had been reading our blog.  I got a little teary, but I was relieved that they knew.  I just love them and they are always so sweet to us and the little girls so I was glad I wasn't going to have to explain everything, but that they could know what was going on.  I went out and brought the girls in.  I am sure that it was hard for them to see Tatum because she is a different baby.  I know that I need to go about our daily life though and let people see her and feel her sweet calm spirit.  They were awesome about it and I could feel their concern for our family.  Thanks to Smileperfect for being the best orthodontist office ever.  So we went and picked up the rest of the kids from school and headed home. When we got home I went around the car to get Tatum out of the car and I saw Hilary coming toward the door.  I opened the door (can you see where this is going?) and I opened it up and she came flying out straight on to the concrete on her head!  Are you kidding me?  I scooped her up and ran into the house.  She was crying, I was crying.  I just couldn't believe it.  I got her settled down and gave her a bath and I think that she just has a bump on her shoulder and a bump on her head.  Emergency room averted.  I was feeling a little down at this point.  A couple of good friends brought us a delicious dinner and another neighbor stopped to visit.  I started to feel a little better.  When Lance got home I was showing him what was for dinner and getting ready to take kids to piano when I spotted a little piece of brownie that was calling my name.  I picked it up and just as I was lifting it to my mouth Lance reached across to grab something and knocked it out of my hand on to the floor, followed by the dog snarfing it up!  We started laughing so hard we were crying.   Maybe we were just crying, no we were laughing.  You just have to at this point, right?  Sorry to bore you with that looooong story, but I just wanted to testify that life just keeps going on.  Some days I would like a pass card, like don't you know I have a terminally ill kid?  But that my friends is not how it works.   Tomorrow I will try to wake up with a better attitude!  and maybe not try to live like life is normal because guess what it just isn't right now.  Thanks for indulging me and reading the crazy happenings in the Walker home.

Monday, March 11, 2013

The gift of a Raspberry

We had a crazy night, Tatum decided to stay up until about 1:30am.  I have a hard time sleeping until she sleeps even if she is calm and settled. So we hung out together until she drifted off.  Just as I got her settled and I laid down, Hilary woke up.  I got her settled back down, laid down, maybe dozed for a few minutes and she was up again, and then again!  What the?  Finally at about 3:00 I think we all settled in for our 3 hours of sleep:) oh maybe that was just me.  I got up around 6:30 and got the kids going, lunches made, etc. etc.  After everyone left for school I started with miss Tatum.  She seemed like she felt better this morning.  She was smiley and happy, so I got her meds and did her a little bath and did her teeth and lip balm.  It's my favorite time with her.  I feel like maybe she feels better after all of the pampering.  I am sure she doesn't love it but she pretends for my sake because that is who she is.  Then she went back for a little nap.  Hilary was still asleep so I hurried and got the Monday morning rituals taken care of.  I got myself ready for the day and then Hilary came down.  Got her ready and then Tatum was starting to wake up.  I no sooner sat down with her and Hilary announced that she needed to go potty.  Only what she meant was that she accidentaly forgot to put her poopy in the potty.  Sigh.  I heard Tatum making some noises so I went in to see what she was doing.  She was working super hard to blow raspberries with her little cute tongue!  It was so darling because you could tell that it took all of her concentration and energy, but she was determined.  I immediately grabbed the video camera and got her doing it.  Another priceless gift.  A raspberry.  Then Hilary pooped her pants, two more times, that's right TWO MORE TIMES!  Then you guessed it, the dog threw up.  Are you kidding me?  I think that Tatum saved the lives of  her sister and the dog.  The gift of a simple sweet raspberry:)
A good friend brought me lunch and took Hilary to Costco for an hour, and another friend brought me Stephanie Nielson's book.  I am so excited to read it.  Talk about a tough trial.
The home health nurse came and said that her tube sight looked great but she thought her breathing seemed labored.  She is still oxygenating at 95-97%, and still sounds about the same as she has, so hopefully she just isn't used to hearing Tatum's kind of lungs.  They are special lungs that always sound a little gurgley.

Sunday, March 10, 2013

G-tube day 3

Today started off really good. Tatum slept pretty good and there didn't seem to be any complications with her new tube. Yay!  Lance had decided to stay home from church today and let me go to the church meetings. Tates still doesn't seem comfortable in her car seat so no sense making her uncomfortable for three hours, right?  This way Lance could get caught up on his HGTV!  Church was great. I came home during Sunday school so we could clean around the tube sight and get Tatum cleaned up and situated. After cleaning the sight we are supposed to twist the tube similar to what you do with new pierced ears. Yesterday we watched the nurse do it. Let me tell you that is a lot different than doing it yourself. I felt pretty lightheaded after I did it. I can't believe the physical trials this poor little girl is having to endure.  And yet she is still so pleasant. Definitely Lance's kid:)   The rest of church was good. All of the kids walked home because it was so nice outside, even Hilary walked home with Heidi and Amy.   We had family come down to visit and play some games. Around 7:00 Tatum started acting like she was going to throw up, not a good sign. So we turned down the flow of her feeds until we can watch her for awhile and talk to doctors in the morning. It is so unsettling to watch what this hideous disease has done to her body in 3 short weeks. Unbelievable. The only solace I can find sometimes is the peace that I have felt over and over that this is what Tatum  was sent here to do. The thought of sharing has come to my mind over and over during this trial. It has been two fold.  I have felt time and time again that we are supposed to be sharing Tatum's life with others so that we can share our faith with those around us and let them feel the enormous spirit that lives in that tiny body .  Several people have told me that they felt such a sweet presence around her. We know that she is sent to soften hearts and bare witness of the Saviors love for all of us.  This is our time to exercise our faith and truly live what we believe. Our faith does not take away the hurt, but it gives our trials meaning.  Our family will be stronger because of Tatum's life. 
I have also thought of "sharing" one another's burdens.  We have seen example after example of people trying in every way to help carry and lighten our burden. It is unbelievable the love we have felt. 

Saturday, March 9, 2013

Home Sweet Home

When we "woke up" this morning, (I use quotes because neither of us got to sleep:)) the nurse told me that after our teaching about the g-tube we could go home.  I went in to hyper mode, trying to get everything ready so that the minute we could leave we were ready.  We did our teaching and we were out the door at about 12:30.  Tatum didn't love the ride home so I sat in the back with her.  We did go over a big bump and I yelled out "whoa Nellie!" and she gave the biggest smile.  She knows we are just crazy around here.  I think she was happy to be home.  Hilary was happy to see us, for at least 5 seconds.  We got her all settled in her deluxe spot on the living room couch and she has been doing pretty good ever since.  The hospital loaded us up with supplies and these cool gel pillows.  They will be really good for her since she can't move herself at all.  We move her a lot but this will just make it more comfortable for her   I can tell she is still sore because when we move her she whimpers a bit.  I didn't hold her almost all day yesterday after surgery because I didn't want to move her too much.

When we got home today, I needed some "Tatum Time".  Once we get her settled in our arms, she does well and is relaxed.  We have had a pretty uneventful evening at home.  We will keep her home from church tomorrow so that she can heal a little more.  I think sitting in the car seat is a little much on her tummy with her lack of muscle tone.  She so enjoyed church last Sunday and so I am sad that she won't go this week, but we will bring her for sure next week.
So lucky to have little Tates home.  Thanks again to all of you for your prayers and support.  I just can't say it enough.

Tough as Nails Tatum

Tatum is a total trooper. She did really well all night. She is doing well pain wise, tolerating her feedings, right now she is sleeping good and calm. This girl is a Walker!   Our family Motto is "we can do hard things". She is rocking that motto. I think of her incredibly amazing and strong resilient spirit inside this broken frustrating body. Not fair sweet girl!  She has started to give her sweet little smiles again. What a blessing she is. What a reminder to remain faithful and strong and not complain about the trivial things in life. I couldn't love her more. What an example of an elect daughter of God.  We are lucky to be in her presence.

I know that prayer is real and that fasting works, and so I thank all of you for offering your support during these past few weeks. We have felt all of it. We have been the recipients of countless acts of kindness and again I use the word overwhelmed. We cannot ever begin to repay or personally thank everyone. We are so humbled and grateful.   Because of all of you and our tough daughter we should get to come home today and resume our crazy life. I know Tatum misses her sibs!  She always has a special smile or laugh for each of them. We are anxious to be home.

Friday, March 8, 2013

Surgery day part two

Things are looking up
1.  Roommate moved!
2.  Tatum peed!
3.  Tolerating milk!
4.  Tatum pooped!
She is a little rockstar. She just keeps checking things off of the list one by one so we can get home. Can I tell you how much I love technology. It has been so great to here (I spelled that wrong to see if my daughter is reading the blog:) from all of you through Facebook and text when my phone is working. Sorry I can't respond to all of you. Your prayers and concern are felt and so appreciated. We have the best friends and family. I feel a little like I am in a different country and so to be able to have words of encouragement sent our way is so helpful. Tender mercies. Thank you thank you

Thanks too to the skilled and caring doctors and staff who have taken care of our sweet Tatum to this point.

Surgery Day

Well surgery day finally arrived after a very sleepless night, for mom and dad not Tatum. The morning was pretty uneventful. We arrived at the hospital right around 11:00 just in time to hurry up and you guessed it WAIT! We moved from waiting room to waiting room kind of like cattle. They needed a little blood work and so they had an IV team come and put the IV in and draw blood at the same time. I warned them that she was a difficult stick and they got her IV in one stick! Awesome start.

Then it seemed like we waited forever til the anesthesiologist came and talked to us   He seemed familiar with mitochondrial disease and said he would be very careful with her sedation.  We felt very comforted after that. Then we walked her back to the entrance to the OR and put her in the wagon and they took her away. It was awful. We ran to the car and dropped some things off and grabbed a little something to eat then back to the waiting room. The surgeon came out after another 20 minutes!  So fast once they got going. He said things went great. About 20 minutes later they came and brought me back to recovery and they had already removed her breathing tube!  We are now settled in our shared room with our screaming neighbor:). I felt sorry for the baby for the first few hours!  Tatum has had moments of sadness, I think because she is hungry and maybe a little irritated from the anesthesia?  But her cry is so soft there is no way the other family can even hear her. We get to start pedialite at 7 and then milk after a few hours.  Cross our fingers that she will tolerate feelings and that they will move our neighbor to another room:). Strange coincidence Lance was going to stay overnight with me but now he is considering going home? Hmmm. I will post later to let you know how feedings are going.

By the way my phone doesn't work in this very expensive hotel so sorry if I don't return messages right away. Grrrr my only outlet to the outside world. Thanks PCMC and Tmobile

Thursday, March 7, 2013

Day before Surgery...

Tatum had a pretty good day today.   We had several visits from friends and lots of well wishes for her upcoming surgery.  She got some new jammies for the hospital from a few friends.  She stayed awake a lot today.  I am always amazed  at how long she can stay awake after seizing all day and all of the meds that we give her, how she does it I will never know.  She is tough as nails!  Speaking of nails, the Walker girls all unified and did pedicures so that Tate's would have pretty toes for surgery.  Very important!
She does have the most darling feet.  We check in tomorrow at 11 am to Primary Children's hospital. We are a little anxious, but we feel comfort and know that this is what we should do for her.  I just don't like the thought of handing her over to someone else to take care of her.  If all goes well we will stay one night and come home on Saturday.  We hope for that scenario.  We are so grateful for good friends and family that have truly taken care of us.  We will post as soon as we know how the procedure went.  Thanks again for all of the prayers in our behalf.

Wednesday, March 6, 2013

Cold Feet

I am about to reveal to everyone that I am not made of steel!  It's true. I try not to ever show weakness especially when facing something hard or scary.  The last few days have felt very hard and scary and I have felt my toughness cracking a bit.  My heart has been heavy and I have been having a lot of doubt about Tatum's upcoming surgery.  I have been really second guessing myself.  Then two days ago, we checked her oxygen saturation and she was having a hard time keeping it where it needed to be, so we gave her a little oxygen, and that helped a lot.  But I didn't want to accept the fact that maybe her lungs were getting tired.  After going back and forth for the next 24 hours, oxygen on, oxygen off.  We now have her on a low level  of oxygen.  Which means another tube on her face! Yuk.

 This really worried me about her surgery.  I started to get cold feet.   I went down today to have a "conference" with our pediatrician and the nurse practitioner who have cared for all of our kids.  They both were there for Trevin's whole life and so I really love them and value their opinion, and they are very respectful of parents and their intuition.  We had a good discussion and as I left the office, I really felt comforted.  I love them!  So, the surgery is on like Donkey Kong! (as we say at the Walker home) There is risk in everything that we do with her, and her doctors really think this will improve her quality of life.  That is certainly our goal.  She is such a delightful little spirit.  Everyone who meets her is drawn to her.   We are so lucky to have her in our family forever and especially for this very special time here on earth.  She has been such a little trooper through all of this so we have coined her a new nickname: Tough as nails Tatum!  Such a funny name for a little 13 pounder.  Yes, today, Tatum finally broke the 13 pound mark.  Big milestone for her.
Tonight as I was getting ready to go to our Relief Society gospel class I had this overwhelming feeling that the Savior has such compassion for what our family is going through.  I have felt my heart breaking these past few days.  I know that He has taken upon Him our suffering and pain and it just felt a little lighter knowing that He understood and did not think I was weak for being so sad.  He is sad with me.  Even though He can't take the pain away from us, He (as Brother Eastmond said tonight) will stand with us.  I truly know that, because I feel it.  So grateful for the Atonement. Grateful to our little Tater Bug for all of the lessons we are learning from her.      

Monday, March 4, 2013

Overwhelmed by kindness

Before I start this post, I need to confess.  I hope you all know me well enough to know that I would not have been able to start a blog without divine intervention or a wonderful friend.  It was the latter and probably some of the former.  Shout out to my good friend Melanie.  She set up the gmail account, the blog, everything. The name "Tatum Time" even comes from her.  After Tates was born, she would call and say she needed some Tatum time.  Even before she was sick, Tatum just had a special feeling about her.  You just wanted to spend time with her.  There is the whole story.   That feels better.  I just didn't want to write under false pretenses!  Thanks Mel, this has been a great thing.
So, on to today.  Tatum had a  pretty good day.  She spent the morning with dad, while I went and did a few work things.  Then this afternoon, she was literally laughing at Hilary and her antics.  It was sweet.  I got some video of it.  Priceless memory, especially when Hilary gets older.  Then there was a knock at the door and it was my cute neighbor, who has health problems of her own, with a big tray of cuties that she had peeled and separated.  What?!  It must have taken her forever to do that.  The weird thing was that I had just thrown away the last of my rotting fruit.  We were fresh out of anything resembling a fresh  fruit.  Inspired friends.  Then a little later another friend came by to visit.  Then another good friend had dropped by some paste on bows for Tates because I refuse to make her wear a headband at this point in her life: (here she is sporting her new look!)
How are people so kind and inspired?  We have had so many kind notes, emails, text messages, phone calls, meals, visits, the list goes on and on.  We are soooo lucky.  It is seriously overwhelming and emotional just to think about it.  I hope everyone who reads this knows how much we love them and how much every little effort means.  What may seem small to you is  huge to us.  So thank you.  I am truly inspired by the kindness and love we have received.

What a blessed sabbath!

Sunday morning was great. I was able to get to both meetings I was supposed to attend. It just feels good at this point to be able to achieve normal tasks. I was able to be surrounded by the YW ladies that I love and then the girls that I love. Overall a great morning until I got home and saw that Tatum was having a lot of seizures. I waited for a bit and then I emailed her neurologist to see if we could tweak her medications  within about a half hour she settled down and we decided to take her to church. We have YW first and it was on the Atonement! Perfect lesson to remind me that through the Savior all will be made well again and that He has given us an escape from the awful monster of death.  By the time we got to sacrament meeting Tatum was smiling at everyone and then she started cooing and making noises that she hasn't made for almost three weeks. It could have been my horrible singing that was inspiring her to make sounds but I like to think that she was feeling the spirit. I am positive that she can see things that we can't. I am sure her ministering angels were there. I am also sure that she felt everyone fasting and praying for her. It was a great day. After church we ran up to our brother-in-laws for dinner with some of his family to break our fast together. It was a delicious meal. I was so grateful for the strength I was blessed with during the fast so that I could participate. Another prayer answered. God is good!

As I am sitting here typing Tatum is laughing and making the cutest noises because Hilary is being silly. What sweet gifts we have received these past few days. Every second is a real blessing.

Saturday, March 2, 2013

Tatum goes tubeless!

Life is never dull here at the Walker's.  We had just your average crazy Saturday with the kids going about there daily fun, riding bikes, sledding, playing with friends, CLEANING ROOMS, babysitting, etc.  Lance and I were going to take Tatum on her first big adventure since she was in the hospital.  We were going to a wedding reception for a co-worker up in Salt Lake City.  We started to get ready and Tatum's feeding pump gave the signal, NO FLOW.  Nice timing, right as we were walking out the door!  (it actually would have been soo much worse to get all the way to SLC and then realize that she could no longer get food, yet another tender mercy in the life of Tates) So I started messing around with the tube and decided that it really was clogged.  I tried to pull any clog that I could out with a syringe.  Didn't work.  I called our pediatrician and she suggested to try and pull with the syringe again and then put a little Coke down the tube.  Exciting for Tatum, her first Coke at 9 months!  And we don't even live in the south.  Luckily she only has two teeth to rott:)  After a few minutes we were able to get the clog out.  High fives for mom.  Just like that we were on the road.  Up to Salt Lake and back and no troubles.  Tatum seemed really unimpressed with the whole trip.  We got home and I went to get her out of her car seat and I heard a ripping sound, just in time to realize that her feeding tube had hooked on her car seat and it was now about 70 percent out of her!  Because her tube goes into her small intestines, there is no way to just feed it back in.  Now we had to just pull it the rest of the way out and call the Dr.  Nice one mom!  So immediately we took pictures:) Tubeless Tatum:
 So we had to run down to the hospital, by now it is 9:00.  The man in radiology was great, got her tube in quick and Tatum was tough as usual.  Then we went to Labor and Delivery and visited with our nurse friends.   It was great to see everyone, and for them to be able to see little Tatum.  We are certainly all on this journey together.  That was our exciting day.  You just never know what is around the corner with this little cutie.  We sure do love every second we get to spend with her, as does Hilary (shown above in picture 2)  We will let you know what adventures we have tomorrow.

Friday, March 1, 2013

Tate's is getting a g-tube

Tatum goes to Primary Children's Medical Center next Friday to get her permanent feeding tube. I am terrified for her to go under anesthesia and I am afraid that her  stomach won't work since she hasn't had food in it for 2 weeks. We are taking this fast Sunday to concentrate our prayers for those two things and we would love for anyone who wants to join us in that effort.

Yesterday was a pretty good day. I was able to get lots done. I even stuck a yummy dinner in the crockpot, made roll dough and a jello salad. Then I made a cake for Holden to decorate for the blue and gold banquet for scouts. Then I remembered that we would be eating dinner at the banquet! Dang it. Oh well it still felt good to do normal things:)

The beginning

To start this blog off I felt like I should tell some of the beginning of Tatum's story before we get into the day to day life and happenings because not everyone knows what happened on February 12th. I am not a great writer so forgive me.  I never had a desire to do a blog but so many people have shown interest and love to our family.  This was the quickest way to get information out to everyone. So here we go.   Since Tatum was a little baby she has had such a sweetness about her. She also always has had trouble gaining weight. We hoped that it was just because she was a walker. At about 4-5 months old I started noticing that she was delaying developmentally, not rolling, sitting, bearing weight on her legs, etc. At about 6 months we started feeding her through a bottle to see if that would help her gain weight. In the middle of December I took her to my pediatrician and started asking about her tone and development. We had a conversation about the similarities between her and our oldest son Trevin. That was the first day that I really let myself begin to accept the fact that she could have the same disease that he had.  A few weeks later we went to a neurologist who did an MRI and sent off genetic testing.  It seemed like time was dragging because we had to wait 3 weeks for the test to come back. Friday February 9 Tatum was admitted to the hospital for what we thought was the flu. She went home on Sunday then we had an appt up at PCMC on Monday  the GI doctor mentioned that kids with mitochondrial disease have throwing up episodes and since she had no other symptoms of flu it could have just been a symptom of the disease. The next day, Tuesday February 12th, was normal. Tate's looked so great. Bright eyed and smiley. We went to our workout class in the morning then when we got home I got her out to feed her and I noticed a rhythmic tick in her leg. I hurried and got ready and got her and Hilary into the car. I called my doctor and told them she was doing something weird. By the time I got there the tick had traveled to her arms. My doctor took one look at her and said lets get to the hospital. By the time we got to the hospital she was in a full convulsive seizure. It lasted for three hours. This is exactly how our son began his journey with Alpers syndrome so we knew at that point what the genetic tests would show. There have been a million tender mercy's along this journey. Prayers answered, etc. now you are sort of up to date. Sorry so long:)