Friday, May 31, 2013

Well Done Tatum, Well Done...

Ahh sweet Tatum.  Obedient and true to the end.  Lance and I and the kids had all been praying for her to be able to pass peacefully without pain.  My addition was that we all be together listening to sweet music holding her and loving her.  I wanted the kids to not be frightened and to feel comfortable holding and kissing on her.
She obediently waited for all of the end of year activities of school to finish up and to not conflict with a few other important things that were happening.  Then she was so peaceful and sweet this entire day.  The kids were all here and it was so peaceful and not scary.  On top of all of our requests, she truly went over and above and gave us an entire bonus day to just spend with her.  I was able to hold her almost the entire day, and not feel tired.  (Maybe I dozed a few times, but I was still holding her.)

We started off the day sending the kids up to their beds after our slumber party with Tatum.  Shortly after that the Nurse Practitioner from our Pediatricians office came by to check on us.  Tatum had been awake all night and we just really wanted her to be able to rest comfortably.  She helped us feel so much comfort as she expressed her feelings about what she felt Tatum was feeling.  We decided to give her a little extra of one of her seizure meds to see if that would help her to settle down and rest and to not resist what her body was trying to do.  Then she helped us to clean up Tatum's tube sight that had been leaking fluid.  After she left Lance and I sat with Tatum for the next few hours just holding her and enjoying her.  This was such bonus time because I was so sure that she would pass the night before.

About mid morning I got a text from a neighbor saying that she had left something on our porch.  This is what we found:
A sketch of our beautiful Tatum right before she got sick.  She captured perfectly the sweet sparkle in her eyes and just her quiet calmness.  We were all stunned by the likeness and the beauty and the complete accuracy.  The photo that she used was one that Tatum was wearing my favorite outfit when she was that age.  She wore it a lot!  She was so inspired to drop it off today.  Words can't express our thanks.

Later in the morning our Pediatrician called to check on us, as he was out of town.  Then a little later one of the ladies from his office called.  She was my "Therapist" when Trevin was sick so many years ago.   It just had a calming influence to know that they were thinking of us and praying for us.
Tatum was finally able to rest.  I was holding her and kissing her and smelling her.  I am sure I was driving her crazy.  I wasn't sure if we had minutes or hours or days or weeks left with her , so I was trying to soak it all in.  I really wanted to just memorize her smell, her feel in my arms, every inch of her.
Once she seemed like she was settled for a bit I decided that I would take a half hour and take a shower since I hadn't showered the day before.  We all feel better after a shower right?  I put on a comfortable skirt and a cardigan because I knew I would be ushering my sweet elect daughter to the other side.  I wanted to be dressed appropriately to be in the presence of her and her welcoming committee of other elect angels.  Then I brought out a towel so we could give Tatum a bath.  As I was getting things ready I realized this would be the last time that I would be able to care for her sweet little body.  Oh how I love that body, even though it was so broken, it is still how I know her.  My heart was just sick as we lifted her to the towel to see all of the horrible things that this disease had done to her body.  It was so nice to be able to clean her up and get her in fresh jammies and a fresh diaper and blanket, and change her g tube dressings.  I washed her hair and her face and her hands and feet.  I have said it a hundred times, but it has been such an honor to care for this sweet little angel.  
We took her sat monitor off and just checked her off and on throughout the day.  All day she was satting at mid to upper nineties with NO suctioning.  I did not understand how.  She had always seemed so fragile, until now.  This girl had a lot of fight in her.  Walker style, as Hayden would say "like a boss"!   One part of me really wanted her to be able to rest and go be with the family on the other side but I was certainly enjoying this sacred time with her.  I know that it was one of  her many gifts to all of us, namely me.
Overall this was a quiet day, with just a few visitors.   About 4:00 I noticed that her breathing was getting shorter and faster.  When I checked her sats she was still in the mid to upper 80's.  She is simply amazing.  It was comforting to me to know that she was not being deprived of oxygen.  Your first instinct as a parent would be to want to just turn up her oxygen level but that would just prolong her agony.  Even though her breathing was getting a little more choppy she was still really peaceful.  I just kept loving her and talking to her and telling her that everything was OK.  At about 5:15 I noticed that her breathing had become a little shallow and less frequent.  I called to Lance to gather the kids if they wanted to be there with her.  We all gathered around and  held her hands and kissed her and told her we loved her and she quietly took a few more breaths and then just stopped breathing.  It was really so peaceful.  No struggle at the end.  Our sweet Tatum can now rest.  No seizures, no swelling, no fevers, no g-tube, no oxygen, no more pokes.  She is free to move.  So much relief for her.  So much sadness for us.  Our kids have been so brave during all of this.  When I look into their eyes my heart aches to know their anguish at losing someone that they have loved so dearly.  Like their baby sister they have been champs and demonstrated such strength and grace through it all.
We sat with her for another half hour and then we made a few phone calls and sent a few text messages to let people know.  Then we called the mortuary to come around 7pm.  I was so happy that she would not have to have an autopsy or be in the morgue at the hospital.
We sat with her and loved her and took turns holding her.  It was so nice to hold her sweet little body close to mine without her pillow between us.
 Luckily someone came and dropped off some food to us or we may have starved or forgotten to eat all together.  People are kind and wise.  The nurse practitioner came to our home again to check on us.  Again, can you understand why I love these people?  The mortician showed up right after that.  We all visited for a bit and then we prepared to say our final goodbyes.  This is where the heartache begins again.  There is that initial shock of this has really happened.  Then you start to feel a little numb and you don't feel the reality as much (the Comforter)  and then you have to just hand your baby over.  In reality I had never even been away from Tates for more than a few hours straight in her entire life.  My mind and my heart were not sure how to process this.
The mortician brought a regular van so that the neighbors didn't have to see a hearse, and let me add she didn't have to ride in one, casue that's creepy, right?   He waited outside while we said our goodbyes to her mortal body.  We all kissed her and then I changed her diaper for the last time and wrapped her up nice and Lance and I walked her out to the van.  We put her on the stretcher and he wrapped her in a blanket and buckled her in and then quietly drove off with the focus of my life for the past year.  I cannot even explain the emptiness that has since filled my heart.  I know that I will survive this and that my life will carry on, but there will forever be a whole in my heart where this little sweetheart is supposed to be.

Last picture with all of the kids, minus Trevin of course.  Maybe if you look closely you could see him?
 A sisters bond is something special...
 Now I am just avoiding sleep because having done this before, I know that if I actually fall asleep I will have weird dreams and then I will have to wake up and have to retell my brain and my heart that Tatum is gone.  No more hum of the oxygen concentrator no more beeps of her sat monitor or her feeding pump.  No more changing diapers or cute little baby laundry.  The ache of this reality is so raw.  I do not know how people could possibly do this without the incredible knowledge that we have been given that we all live again.  That we see each other again, that this life is not the end.  I know that Tatum is sad to leave us, but thrilled to see others that have gone before her.  We mourn here on earth while in the spirit world there is pure joy and rejoicing.  The joy at seeing her sweet brother who had a similar mortal experience must be something very special.  Only he can fully understand her experience.  What a comfort to know they are together.   I am so happy for her.  I hope they are up and ready to go.  To be watching over our family is no easy task, which is why I assume we need two on the task:)
Tatum has taught our family so much.  We will never forget her gentle sweet tender spirit.  Her unwavering strength will forever be an inspiration.   Good night you spiritual giant.  Well done sweet daughter, well done.  We love you Tater Bug!

Angels are Near....

We just wanted to take a minute to update everyone.  We feel the end is very close.  We have felt such peace in our home and around her.  We know that her angels are near and that her departure to the other side is very near.  We had the kids all come down last night and give her kisses and spend time with her.  We had a sleepover and they all spent the night on "her" couch last night so that they would be close if she passed.  Much to our surprise she did not pass in the night.  She is giving us all of the love she can before she goes.  Watching her do this hard thing is very difficult and inspiring and comforting.  I know that our Heavenly Father designed our bodies for these circumstances.  She seems very peaceful despite the horrific signs that her body is giving.   We are so fortunate to have her home with us and we have loved every second that we have had to snuggle her and stroke her sweet head.  We love this little angel in our midst.  How lucky are we?

Yesterday was a pretty great day.  It was a short day at school for the kids so they were able to go do some fun things after they got out.  Lance and I were able to spend quite a bit of time with Tatum and Hilary.  I really just sat on the couch and held her for most of the day.  We had a few visitors but for the most part it was quiet.  I did get the chance to fire hospice:)  It just didn't feel right.  I felt so uncomfortable adding anyone new to Tatum's care.
I took several pictures yesterday because for some reason her coloring looked so much better to us.  What a blessing.  So we took some video and some pictures.  Lance helped me get her ready in the morning and she looked beautiful in her butterfly shirt.  These past few weeks I have had this overwhelming feeling that I have been taking care of a sweet little older person, not a baby.  Her hair even appeared to change color.  Her enormous spirit has emerged from her little body.  What an honor to be her mother.  I don't know what I will do when I can't take care of her anymore.  To some the day to day care of her might have seemed a burden or overwhelming, but I have truly counted it as one of my biggest blessings in this life to be the one to care for her.   Last night as I was getting all of her medicines ready, I was so sad that it could be one of the last times.  I hope that she has felt that respect and love.

She was awake quite a bit yesterday, and when I would look at her she would look right back at me, like she was listening and soaking it all in.  I was having Hilary help me yesterday to sponge Tatum's mouth and put on her lips (chapstick).  Hilary always liked to help me with that.  I told her that Tatum was going to live with Heavenly Father soon and she said "But I need her".   Ohhh.  I know.  I need her too.  This whole night I just keep thinking, how do I turn this back.  Please don't let this happen.  Then I look at her trapped in this broken down little body and I have to be OK to let her go.

We have been so abundantly blessed with good friends and neighbors and family and co workers that have constantly checked on us, served us, loved us.  We have seen the greatness in all of you.  We can never express our thanks.  It has meant so much to our family.  We are especially grateful that you have allowed Tatum to complete her mission here on earth by feeling her goodness and sharing her message that there is a plan for all of us, and that Heavenly Father loves each one of us and that our Savior walks beside us daily to help us to hopefully return to our eternal home when the time comes.  What an example and a true angel we have been in the presence of.  We love you Tatum Hope Walker.

Thursday, May 30, 2013

My Peace I Give Unto You...

Not as the world giveth, give I unto you.  Let not your heart be troubled, neither let it be afraid.  (John 14:27)
This has truly been a day filled with peace.  The Comforter is near.  I don't know why, with my heart so broken that I can still breath or function, but I am.  And really, I do know.  It is through the power and gift of grace that the Atonement offers us on a daily basis.  The Atonement was not just  a sacrifice for sin.  Our Savior went the extra  mile to offer us his grace and love to utilize during times like this.  Oh how we need that.  I am so frightened to go these next steps down this very hard sad journey, but I know that we are not alone in our travels.  The Savior is beside us, caring and trying to provide the peace, power, love, comfort, everything that we need.  It is the only way this will not crush my heart to pieces.
I was able to run over to the first few minutes of our Young Women activity.  One of the ladies that used to live in our neighborhood came and spoke to the girls and their moms.  I was so excited to see her and hear her speak.  She is a dynamic lady.  I was sad that I wasn't able to stay, but everyone said she was amazing.  When I got home our Pediatrician came to the house to check on sweet Tatum and to answer our questions about what comes next.  People don't believe all of the things that he and his practitioners and their amazing staff have done for us.  They are truly like family to us.  For some reason after he came I felt better and more peaceful.  He had some answers, but not all, because no one does at this point.  He assured us that the body releases natural anesthetics to help with pain when your body goes into liver failure.  That was probably our biggest concern. We just don't want Tates to be in pain.
Tatum's night was alright.  She required a little suctioning here and there, nothing out of the ordinary.  The morning was pretty quiet.  The boys went to school today and the girls decided to stay home.  It is the last week of school so we have just been letting them go or stay home, whatever they wanted to do since the last week of school is pretty much worthless.  I would have let them stay home for the last three weeks if it were up to me.  Surprisingly they all usually want to go to school!  I had 35 absences in one semester when I was a junior in High School, so maybe I am not the person who should be in charge of helping them make decisions about their schooling:) In my defense, I had just got my license and I lived 20 minutes from the beach.  Do you see what I was up against?
We had a pretty steady stream of people dropping by and visiting.  Tatum had some pretty good awake time.  Whenever her eyes are open I want to be right there with her so that she knows we are there and so I can talk to her and because I don't know if it is the last time that I will be able to see into her soul.  It makes me sick to think about never being able to see her eyes open again.  Ugghh.
 This is my favorite shirt.
 Her sock monkey is great for positioning, letting her arms rest on him instead of down at her sides!
 Hilary and Tates with their yo gabba gabba gear....
I hate being in pictures, but I have to get over that so I can preserve these memories with our sweet daughter
Looking into her soul and admiring the beauty...

Such a peaceful little angel, even in this difficult journey, peace..

Always available to provide comic relief or have a tantrum to remind us that life is going to go on, miss Hilary Jane Walker.  She has no idea the burden that is hers.  She is going to be the light that leads us out of our darkness.  She has a very difficult task ahead of her, but I am pretty sure she is up to the challenge.  Her spirit is gynormous!
I made the call to the mortuary today.  I have been thinking about calling for weeks, but I just haven't been able to make myself.  Fortunately I hang out with morticians through my work, so I knew who we wanted to go through, I just always thought that it would be for Lance or myself, not another one of our sweet children. Once I got to talking to him and explained what was going on I kind of went into business mode and we were able to get some things sort of settled.  I was really glad that I could take care of that so that Lance didn't have to.  It was nice to know the person on the other end of the line, and  kind of weird.  This was a big task to check off of my list.  I felt relieved to have accomplished it.  The other thing I have left to accomplish today  is to pay our bills.  I don't like to do that in normal circumstances!  Who wants to add that kind of depression to an already sad situation?  Maybe they won't notice if I don't pay them.
Later in the afternoon I had a few hours where I just got to sit and hold Tatum.  It is my favorite part of the day.  I feel selfish because for her to move at all  it is uncomfortable because of the swelling in her belly.  I have gotten pretty good at moving her to my lap in a very fluid quick motion and once I get her comfortable she seems fine.  I don't know if I can give up holding her.  The other thing that is so painful is to change her diaper.   She is so uncomfortable if she lays on her back and when I lift her legs to wipe her or put the diaper under her it pushes on her tummy and so she winces or cries.  Today I sobbed every time I had to change her.  It absolutely breaks my heart that I cannot spare her of certain aspects of this hideous disease.  Lance was helping me change her this afternoon and that seemed to help.  It is such a sacred responsibility to get to take care of her little broken body.  I just hope that she knows that we would do anything to take away these awful parts that she is having to endure.  I know that Heavenly Father will not allow her to experience anything that she is not supposed to.  I am also sure that she has such a greater understanding of her mission while here in mortality than I do.  I don't think she feels cheated that her life is going to be shorter than most.  I feel the calmness and reverence and pure peace that exudes from her.  She is enduring to the end just like she knew she would and could.  Teaching us all along the way.  We are so lucky to have her in our family forever.

Tuesday, May 28, 2013

Let's Just Go Home

We are home.  After such a good day on Sunday, we were pretty optimistic about helping Tatum through this infection and getting her home for awhile longer.  On Monday morning she had a really long seizure and they had to give her some heavy medicine to stop it.  Then her labs came back and the numbers were not great.  The doctors just felt like everything they were doing for her was lasting for a bit and then her numbers were going right back down to abnormal.  They came in and suggested that one of our options was to take her home on the antibiotics and just treat her at home and stop giving her the blood products to try and correct some of her other issues, because they don't feel like they are going to resolve.  I agreed, and I just felt very strongly that we just needed to get her home.  She looks so sick.  Her tummy is still very bloated and her skin is very yellow from her liver failure.  I didn't want her to die in the hospital.  I want her to die in her home surrounded by her siblings and Lance and I.   So I called Lance and told him to come and get us.

This was not how I envisioned this Memorial Day.  Every Memorial Day we hike the Y mountain down by BYU in honor of our son Trevin's birthday.  We have done it every year since he died rain or shine.  I have been pregnant, we have hauled little babies and toddlers, encouraged grumpy teens and pre teens that it was fun, we have hiked through rain and mud and heat.  Last year Tatum was 3 or 4 days old when we went.  She was a little trooper and it was a great hike.  I was so set this year that we would go down as a family and if Tates was having an OK day we would hike her up in her stroller, if she was having a bad day I would sit at the bottom and wait for the rest of the family to finish.  Well, Tatum may have got wind of this plan and decided to foil it:)  She over shot her goal by a lot!  Lance and the kids ended up going up on Monday morning with out us to keep our tradition alive and to honor our perfect Trevin.  I was so glad.  It felt so weird to not soldier through and get to carry out this one very special tradition.

Lance came to the hospital around 1:00 or so and then we waited and waited and waited some more.  Our nurse was awesome, but it just took forever to get everything we needed to break out of there.  We were waiting on the super smart, but socially challenged, lab guys to tell us what antibiotic to send Tater bug home with.  We packed everything up and started out of the hospital.  I have never been so happy and yet so devastated to leave the hospital.  I was happy to leave but so sad that I knew it was the last time they would be able to help us.  We were taking her home for the last time.  I got just a little teary on the way out, and then I was able to gather myself.  I know this is just the process of helping our sweet baby to the other side.  And what an honor and privilege it is, but quite frankly it hurts like the dickens and it makes me really sad.

Tatum's Nurse for three days while we were on the PICU.  Deana:)

Tatum did super good on the way home.  Her breathing was  really good and she  had no seizure activity to
speak of.  I came home to some fun balloons and a clean house and cards on my bed from all of the kids and laundry going and a meal in the refrigerator.  It was so great.  The kids did fabulous.  Then we began the Tatum settling process.  I got her settled on her pillow bed, and started hooking her up to her monitors.  I switched her oxygen from the tank to the concentrator, then the SAT monitor to check her oxygen level.  It stalled at 44!  What the?  I tried not to panic but my first thought was "not on Trevin's birthday".  Then I started frantically checking things. After a minute, I switched her back to the tank and she immediately rebounded to the 90's.  There was a problem with the concentrator.  Lance turned it off and reinserted the humidifier part and then it was fine.  What is it with me and the oxygen?  I have problems with it and it is so scary whenever it goes screwy like that.  Heart palpitations.
We got settled and then we had visitors coming and going for a bit.  Then Lances family came down to give Tater bug a blessing.  It was nice for them to come and help us out.  Then we started the night time routine and then we realized that we missed a call from the hospice nurse that was supposed to have come at 7:00.  We called him back and it was about 9:00.  He thought he was supposed to come at 10:00.  So he came at 10:00pm after we had been in the hospital for 3 days.  That made perfect sense.  NOT.  We were not off to a good start.  Then he was a little too chatty for me.  For me!?  That seems impossible.  I think that I am usually good to keep things light, but I was truly exhausted.  I could not fake around with him.  He was totally not picking up on the social cues that would tell someone to speed things up, like tapping my fingers, sighing, short answers, getting up and doing things as he was talking.  Meanwhile Tatum's sat monitor kept alarming.  He just kept going, bla bla bla.  All I kept thinking was this is an hour and a half that I have lost sitting with Tater bug.  That was it!   Finally I just asked, about how much longer he thought this was going to take.  Then he finally clued in that maybe we were tired.  Well it was 11:30 for crying out loud!  He asked how frequently we would like him to come, but never wasn't one of the choices.  I said maybe just to do her dressing changes for her picc line.  I think that I have found someone else to do that now so maybe we won't need his help with that after all.

Finally at about midnight I was able to snuggle in with little Tates.  Poor dear.  To move her is just painful.  Once I get her settled in my arms she is OK, but it is heart breaking to think that she might be in pain.  How can we watch this much longer?  My heart is just sick.  I slept sitting up holding her and it was perfect.  How can I survive when I can't hold her anymore.  I know I will, it just hurts.
Our kids are grieving in their own way.  They are trying to participate in their activities, but it's hard for them too.  It is the last week of school, this is supposed to be a happy time.  Instead we are spending our last moments with our sweet baby girl.

Today (Tuesday) has been hard.  Her breathing is becoming more shallow, she is tolerating things less and she is soooo yellow and swollen.  I just don't know how much more her body can take.
When I was praying in the hospital to take her home, the angels confused which home.  I am so not ready to send her back.  I do not want to watch her suffer like this though, for that reason I have to pray that she can go quickly and peacefully.  I love her enough to let her go.  And so I will.

Monday, May 27, 2013

PICU Part Two

Tatum update:  Tatum is a little fighter. Where does she get her fortitude?  I think she surprises the doctors every time at how she can respond to things. She is not getting "better" dont get me wrong.  But it is impressive how her little tattered body continues to try and do the things that we want it to.  I feel a little selfish for willing her to fight.  I know she is tired but I think that when it is her time she and we will know and we will be blessed with the peace and understanding that we need.  In summary, her labs look a lot better today. They were worried about her clotting factor today. So the attending doctor wanted to meet with us and our GI doctor to have the talk about what we would do and how aggressive we should be.  Our GI doctor was doing a liver transplant today (what I wouldn't give for a new liver for Tatum) so he was in and out of the OR.  He told the attending that he would absolutely give her another round of blood product to help her body to try and recover and achieve a better blood clotting number. It gave me such hope. He is a realist but also optomistic.   He really felt  like maybe her liver would function a little better if we could just help her out with a few things. It felt like he was validating her life and us as a family. Trying to give us time even if it is just a little more and keeping her comfortable.  I felt super relieved after all of that.
Tatum has hardly needed suctioning today and she is back on her regular amount of oxygen!  those are big things. She is back on her regular feeds and no IV fluids. Her potassium and glucose levels are good after a few hours of no extra fluids. We are thinking about home very soon:). I don't dare speak the word in front of her, but I am sure she would be the happiest of us all to be home.  No more poking, positioning , blood pressures, etc!

I was able to go to the church they have here. I remember going a few times when Trevin was here and thinking that the spirit was so strong. As I sat and watched these young college students bless pass the sacrament I was so thankful for them and their priesthood. What a cool eye opening experience for them. When you are young like that you can be so self centered with everything "big" that is going on in your life.  I'll bet they are changed forever after visiting patients rooms and witnessing the spirit that is felt during the sacrament meetings.  As I sat their and looked around the room I could feel the heaviness of what all of the people that were there were experiencing.  I could feel my own exhaustion and the enormity of my own situation.  It was a good time to let down. Just then I looked up and saw my good friend from Provo walk in.  She was such a sight for sore eyes.  She was in her pretty Sunday attire and as she got closer i could smell her perfume. It was about then that I realized that I hadn't showered yet because I was waiting for Lance to bring a blow dryer to me, and so I was still in my sleepware and I am sure I didn't smell or look my best.  Luckily she still recognized me and came and sat next to me.  We listened for the entire half hour service!  Yep 1/2 hour folks. How will I ever go back to 3 hours?  It may take me awhile to build back up:).   It was a great meeting. They passed the sacrament had a piano musical number and a great talk, the spirit was strong all in a half hour!  Hmmmm?
My friend stayed for a bit and then Lance came up.  Shortly after he got there they moved our room to the other side of the unit. Our first room the nurses referred to as the "cave" because it was in the corner and it had no windows, but it had a bathroom in the room and it was really private so we were ok with it. Until they moved us to our new room that is a corner room that has two full walls of windows.  And a pretty view.

 After we moved I decided that I would finally break away and grab a shower. When I came back in the lady at the desk didn't know who I was.  Our nurse did a double take and said wow you look different!  Apparently I needed a shower:).  When I got back I finished Tate's mani and pedi. Then I did my toes to match hers. We always feel better when our toes are done. Maybe it's just me:)

Overall I would say that Tatum had a good day. Her labs looked a little better and she was almost seizure free. She had some good awake time.  Her breathing and heart rate were really good all day.  Her belly is still really swollen so i cant really hold her because it seems uncomfortable for her.  That is hard, but i can sit right next to her bedside and hold her hand and stroke her head, and she seems happy with that.  Here is hoping that we get to go home soon.

Sunday, May 26, 2013

Hotel primary children's PICU

Well, here we are, still.  I have not read what I wrote yesterday for the blog, but I will bet that it was not totally coherent.  I apologize for that. We were in the ER with Tates until almost 1:00 so I didn't get to write til close to 2:00am I think. Anyway, excuses excuses!  I can't guarantee that tonight will be any better, but I am at least working off of a 4 hour nap!
Today has been a little crazy.  Tatum's labs have been a little off but it feels like they are settling down a bit.  Her liver function is definitely poor at best.  At this point we are hopeful that she can overcome this bacterial infection in her blood so we can get her home and manage her liver and other health issues at home. This morning she was awake for several hours but she still seemed like she didn't feel quite right. Tonight she has had a few hours where she seemed more comfortable and awake. We even got a few little smiles out of her. She has been such a trooper through
 all of this.   Her doctors seemed optimistic that we could get her home maybe in a   few days.   We have had to have some hard conversations though. We authorized the DNR today which stands for do not resuscitate for those who don't have to know about these things. I really wish that I didn't know about these kinds of things. We had this in place with Trevin and so we knew that we would do the same with Tatum.  It just goes against everything you know and believe and love about being a parent. How can I truly tell someone to not try and save my baby. It just leaves a pit in my stomach.  I can't imagine our lives without her, but I have to start thinking abut it. Last night was the first really big step down that horrible corridor.  I was pretty nervous last night that we might not make it out of here. I am a little more optimistic now.
Lance brought all of the kids up today. That was really hard. I am sure that they can feel that hard things are near. Again as a parent I just want to protect them from the hurt ahead but I know that I can't. I know that peace is readily available to each of us through the atonement and that helps me to know that we will be ok. I just know that this journey is not easy and even harder when you have sweet little people to worry about along the way.

I am so grateful for the amazing staff that has taken care of us these past few days. They have listened to us as parents and i know that they have been more optimistic than their schooling had probably taught them. I am grateful for the visitors and well wishers through facebook and text and for my kids for being so brave to come to this very scary place to see their precious baby sister. I am grateful that people are stepping in and taking care of my responsibilities at home and for church and for work, without complaint. I am grateful for technology that has allowed us to keep family and friends updated on our condition. I am grateful for funny morbid sarcastic nurses that have allowed us to be ourselves and cope and laugh and joke even if it didn't seem appropriate. Yesterday i was not as able to laugh, today I have found a little more of that. It feels good to be able to laugh.  I am especially grateful for my best friend that I get to walk this journey with, again.  Lance has been so fantastic through all of this. Who else could I be laughing with one minute, talking about a funeral the next, crying because we hurt, then finding joy and peace and gratitude in all of it.  We truly compliment one another and we are a pretty great team.  I know that not everyone gets that in life. We are very lucky.

Sorry to bore you with some of these details but this is a journal of my feelings and a record of our time with Tatum.  So grateful for this priceless record of our tender mercies from the Lord and for all of the prayers answered during this time of our lives.
I usually like to be awake while Tatum is awake so that she knows we are here. The nurse just came in and asked if I was ever going to go to bed:).  I guess. Should try. I just don't want to miss a smile or to not be here to help the nurses understand that sometimes she just takes a "break" with breathing just to see if we are paying attention. Or to help them suction her even when she doesn't want to let you through her beautiful teeth:). I love her strong sweet personality. Such an example to me  I will be and live better because of her.

Saturday, May 25, 2013

1st birthday to PICU at Primary Childrens

Tatums birthday finally arrived.  I was thrilled because all along I wasn't sure if she would make it. For some reason it felt really important to me for her to reach that milestone. I would love for her to have 85 birthdays, but since I knew that wasn't the reality I set my wishes on that first birthday.  I had a lot of things that I wanted to do, but as usual I just decided to be flexible because generally things don't go the way you invasion in your mind. The main thing that I wanted for her to have for her birthday was the new gj tube in place. We had that and a picc line to boot!  We were sitting pretty.
Luckily my friends had taken charge of all of the birthday festivities. Someone made her a birthday sign that a few neighbors came and helped me hang. We had several visitors all day with cute outfits and books and balloons and cupcakes,  a cute birthday hat the list goes on and on. Truly we didn't need to do a thing.
Toward the evening I went and grabbed us some food.  When I got home we realized that they had forgot half of our order!  I drove all the way back and picked up the rest of our order.

Later that night I was checking on little Tate's and I noticed that her tube site was leaking and that her tummy felt a little bloated.  I wasn't sure what to do.  I knew that her GI doctor was on call and so I decided to call him and see what he thought.  Talking to him, he didn't seem alarmed and so I told him that I would probably watch her through the night and see if there were any changes by morning.  Then I called my nursing lifeline (my good friend in provo that is a pediatric nurse).  She wasn't sure about going up to Primary children's was necessary either. We just weren't sure what they would do at this point.
Tatum slept from probably 9pm until 1:30ish.  Then she was awake until about 5.  It was a weird night, but not totally unusual for her.  The morning was pretty normal.  We had turned down her feedings through the night to see if it would help with the leaking and it seemed to help a little. Her feet and tummy still seemed swollen in the morning but not any worse.  I got her up and ready for the day and then she went back to sleep.
While she slept I ran around like crazy to get some flowers planted that we bought the day before and painted two new planter pots for our front porch. It is always nice to be able to do a few normal things among our currently abnormal life.
When I went in around 1:00 I checked on her again and I just felt like things weren't getting better. Her tummy felt tights still and she still had a little bit of leakage. I called and left another message for  our GI doctor.
One of my friends stopped by and brought me lunch. While she was there Tatum was awake and so we were talking to her and I took a few pictures of her while she was awake. Her energy level is decreasing day by day and so I know that I have to seize opportunities when she is awake.
 I hurried and got showered because I had a feeling that we needed to go to the hospital.  I called Lance and told him to try and come home a little early so we could head up. I packed Tatum's things like Jammie's and such, but nothing for myself. I didn't want to jinx myself.  I was sure we would get there and they would have a simple solution and we could go home. Wrong!  

Since we came to the ER things have gone from bad to worse. They finally got us up to a room in the PICU.  Her labs are whacked and she is just really bloated. They are running tests and keeping her stable. Right now she is holding her own. We won't know any more until morning.  

I think we will bring the kids up to see her tomorrow. We need to start really preparing them and ourselves for the possibility that lies ahead.
I do not want to, but I must. It is really hard to watch her be so sick. She is such a little fighter. 

Sorry no spell check!

Wednesday, May 22, 2013

Surgery day, Check

Tatum Update:  Last night was a weird night.  I was a little wired, with anxiety and anticipation of what was going to happen today.  After about 2:30 am I tried laying down off and on until about 5 am when I felt like I needed to be up and getting ready for the day.  Tatum had needed quite a bit of suctioning through the night, so it was a very restless night, luckily I had had a Tab at the hospital earlier and I had finished off two cokes that were left over from trying to unclog Tatum's tube.  It is really rare that I drink caffeine, so I was a little shaky by the end of the night.  The morning went really smooth.  We got packed up around 6:45 and headed up to Primary Childrens.
When you first walk in to the hospital there are two big pictures of little babies that look a little sickly.  Lance said that the first few times that we went up there ,before Tatum was diagnosed, he remembered thinking how grateful he was that our baby didn't look sick like those babies.  Now we could only wish that our baby looked as "healthy" as those babies.   Amazing how a few months can change your perspective.  
When we first got there we went to the wrong place.  We thought that we needed to go to the same day surgery area to have the sedation.  We were sitting there for a few minutes.   You are sitting in this smallish waiting room with several other families all there for surgeries for their child.  One of the families had several family members there besides just the parents.  I figured that they must be there for a pretty serious surgery.  After a few minutes one of the receptionists told us that we needed to go straight to Radiology and they would do the sedation there just before we were to head back.  We walked out to the elevator and the grandma of the family that we were in the waiting room with was in the hall way.  She mentioned that her granddaughter had the same car seat cover as we did.  We laughed and she said they took a double take, like maybe we had their baby.  She said something to the effect of "oh you would bring her back because she was there for heart surgery and that at 4 months she still only weighed six and a half pounds".  I wanted to tell her something like, well at least you have some hope that your baby could possibly get better.  We are here with hope that we can make our baby's  dying more peaceful.  Out loud I just smiled and said good luck.  I really don't feel sorry for myself, but sometimes people don't realize what others are experiencing.  Especially in a place like a childrens hospital.  You never know what is going on with even the healthiest looking kids. You never know.
We got to the right place eventually and they brought us back to a little room where they were going to start the IV for Tatum.  The nurse was great.  She listened closely to her history and the nature of her disease.  She assured us that she would be very conservative in her use of sedation.  Tatum was super calm all morning hardly a seizure and breathing really well.  Rockstar!
Getting ready for the big procedure...

They got an IV on the first poke, but it was sketchy.  The nurse was afraid that it might not last, she wasn't super confident in the sight.  Then they let us walk back to the room where the tube would be changed and they would place the picc line.  I was grateful that they let us stay with her as long as possible.  I just kept thinking that if something were to go wrong, I would be thankful that I was able to be with her as long as possible.  Eventually they had everything ready to go and they said they would find us in the waiting room when they were done.   They said it would take about an hour and a half.

We left and went to the cafeteria and got a bite to eat and then we went back to the waiting room.  This is where everything caught up to me.  I could hardly stay awake.  Finally after what seemed like an eternity, (especially for Lance since he was conscious) the doctor came out and told us that all went well.  He said that the tube change went fast and easy, it was the picc line that took a little longer.  He said it was pretty difficult to secure.  Confirmation that we really needed to have it done.
We were then brought back to recovery.  I was surprised to see Tatum's eyes open.

I thought that she would be too sleepy, but she was pretty awake for a few hours after the surgery.  Probably thinking Enough already.  What are you people doing to me now, I can't close my eyes for a second!  It took us a little while to figure out some new things about her tube, but once we got that all figured out we were able to pack her up and get the heck out of there.
Tatum has done fantastic since we have been home.  She is peaceful and restful.  I am anxious to see how she is in the next 24-48 hours.
My birthday wish for her is to get her to smile.  It seems like they are getting fewer and fewer.
Thanks for all of the prayers that were sent up for us these past few months, but especially in the past few days and weeks leading up to this day.  This day could not have gone any better.  Prayers were definitely answered today.
Home sweet home, with Brobie!

Tuesdays are FIRED!

Tatum Update:  We are at least home, right?  Tuesday is officially over and we are not in the hospital, so this is an improvement.  Let me start with yesterday.  Monday was a pretty good day.  I hardly suctioned Tates and she just was restful and pretty peaceful when she was awake.  I went and did hand molds on a little guy that went to heaven a few days ago.  He was adorable.  He had some health issues from birth and so his family only got to keep him for a few months.  When I went home I felt inspired to get hand molds of all of us with Tatum.  Halea had been asking, and I had just been dragging my feet.  Hand molds are a lot more lovely before someone dies, in my opinion.  So I knew that I just needed to do them, so it is one less thing to worry about during that hard time.  It was just a random burst of energy, I decided that we would do them for family night.  One at a time I did all of the kids, except for one.  Can you guess who?  Yep, Hilary.  She watched us and said, "I don't want to put my hand in that goo!"  I talked to her several times, but she refused. I didn't push it.  Today as I was finishing them she started seeing everyone's hands and I asked her again if she wanted to do one and she goes "Fine!".  I jumped into action and hurried and got it done before she changed her mind, as three year olds do.  They all turned out beautiful.  They aren't quite finished, but I took pictures so you could see what I was talking about.

I don't know which picture is easiest to see, because I am going blind, so here are both pictures.

On Tuesday morning I had been up and down all night.  I woke up at a little before six and realized that Tatum's feeding pump had not alerted when it ran out of food, so it was pumping air into her instead of food. Awesome.  Who knows how long it had been going.  I quickly changed the bag and started up another feeding.  At 8:30 the pump alarm went off saying that there was a block in the tube.  Great.  I started trying to unclog her feeding tube, to no avail.  After about an hour of pushing and pulling with a syringe, I was getting a little nervous.  The last time this happened they told us to try coke.  Makes ya feel pretty good about something you are drinking recreationally when the doctors use it as a tool to dissolve blockages!  I did not have any coke, so I called my neighbor who happened to be visiting with 2 of our other neighbors.  Between the three of them they came up with a coke.  My neighbor ran it over at a moments notice, all for sweet little Tater bug.  I got to work with the coke, again to no avail.  I called my doctor and he gave me a few more suggestions and told me to call if we couldn't get it unclogged.  I was freaking out, because the next solution would be to place another tube!  No way.  When it got to 11:30 I started panicking because Tatum had been without feeding for 3 hours.  She has no reserve and so I felt like I needed to act quick.  I made some arrangements for Hilary and packed up Tatum and off we went to the doctor.   On the way down I had the thought to grab another one of the nj tubes from the newborn ICU.  They come with a wire inside of them in order to push them down to place them.  I thought maybe we could use the wire to see if we could push the blockage through.  My NICU buddies grabbed a tube and met me  in the parking lot.  What do people do that have no hospital connections?  I am so lucky.  We worked on the blockage for a good 45 minutes at the doctors office, unsuccessful.  They called radiology so we could go get another tube placed or see if they could somehow unclog it.  This was at 1:30, now Tatum had been without food for 5 hours and I was feeling panicky.  Especially with the impending procedure the next day where she was going to have to fast for some hours.  Stress.   They said they could not see her until 3:00.  I was pretty furious, so i decided that I would go and check in and sit in their waiting room in case they had an opening before 3:00. I got there at about 1:45.  There was no one in the waiting area.  I checked in and told the receptionist that I knew my appointment wasn't until 3:00 but I thought I would come down in case they had time because i was nervous that my baby had not had feedings since 8:30 that morning.  I heard her call and tell the techs that I was there.  In the meantime one other man came and they took him back after about 10 minutes.  In the entire hour and fifteen minutes I was there he was the only patient they had!
Before they called me back a lady came in to pick up a lady who was back having a procedure.  She was standing in the waiting area holding a little guy who looked about Tatum's age.  She saw our stroller and said to her little boy, "Let's go see the baby".  I thought oh boy here it goes.  She came over and looked at Tatum and said how beautiful she was.  I said thank you.  I guess I should have told her that her baby was cute.   Whoops.   I was in no mood at this point.  Then she asked how old Tatum was.  I told her that she was turning a year in just a few days.  She said her little boy was turning a year the next week.  Then she said how little Tatum was.  Did she miss the feeding tube and the oxygen?  Out loud I just smiled and laughed a little.  Luckily my friend that I do my hospital work with was in the hospital.  She came and brought us lunch so that I didn't have to kill anyone and end up on the ten o clock news or something.
A young girl finally came and called Tatum's name right at 3:00.  As we were walking back she said "sorry it took so long we have just been crazy today".  Yeah right.  I have been sitting in your waiting area you dummy.  I responded with "Well, I am just a little worried because my baby hasn't had feedings  since 8:30 this morning", her response (I am not making this up)  "I am sure she is getting everything she needs".  Really?  Oh from the air?  I probably could have killed her with my bare hands.  Luckily Melanie had got a chicken sandwich and fries in me.  Lucky girl.
The good news is that the radiology guy was able to unclog the tube so we didn't have to place a new one!!! All was suddenly forgiven.  Then he took an xray and realized that the tube was in her tummy, not her intestine like it was supposed to be.  My heart sank.  I asked if he could just push her tube that was in already further down into her intestine.  He said he could.  He did it and we were on our way.  What a relief.

This entire time, Tatum was breathing so good.  I never had to suction her and her seizures were calm.  Apparently the girl has an aversion to food.  As soon as we started her feedings she started to get a little gurgly.  Darn it.   She did really good all the way home.  We got home and got her all settled.  After about an hour I noticed that her heart rate was pretty high.  I went and felt her and she felt a little warm.  I got her some Motrin right away.  After a few minutes I took her temp and it read at almost 103!  Good grief Charlie Brown.  We put a cool rag on her, which warranted a picture, of course.
Poor girl.  I don't think anyone hates Tuesdays as bad as Tatum.  This dumb fever came and went quickly because it was just from the trauma of the day, not an actual illness.  She really just can't take things like dehydration.
It is now 2:30 am.  We only have 5 1/2 hours left.  I feel like this has been the longest wait ever.  I pray that things will just go smooth for her and that she will be strong and comforted and that her body will cooperate and that those that will be working with her will be guided by the spirit in the things that they need to do for her. I will feel  so much more settled once this is done.
I took these pictures on Monday.  I just love the lighting at this time of day, and she is wearing my favorite outfit..

Love her sweet little pudgy hands.  

Sunday, May 19, 2013

Let the Celebrating Begin!

Tatum Update:  I will say this quietly, good day.  Tatum had a pretty quiet decent day.  Last night was terrible, more for me than her.  I usually don't have the sat machine on at night, because usually she gets to sleep and breathes clear and she is calm.  Last night she just didn't ever seem to get in that rhythm, so I decided to sleep with the machine on.  Bad mistake.  It went off like every 10 minutes!!!  I am telling you that my new least favorite number (if you have such a thing) is 89.  Whenever her oxygen sat drops below 90 it beeps, really loud.  So literally from midnight to 6 am ,when I finally gave up trying to sleep, it went off every 10 minutes.  On the bright side, she had a fairly good day.  We had to suction a bit.  She was coughing a lot through the night and a little this afternoon, and now she is breathing like you and I.  Go figure.  I am hoping that she hacked up some of the pneumonia and now she will sleep easy tonight.
We know that Tatum is only going to get to celebrate one birthday.   So we decided that we will celebrate a few different times so that we have some memories of this time with her.  We had some of our extended family come down tonight.  Right before they arrived Halea was helping take some pictures of her.  She was flipping through pictures on my camera and came across a picture of Tatum from several months ago, I think that it was right when she got sick.  She showed it to me and I lost it a little bit.  I know what this disease has done to her, but I really see it when I look at pictures of her from right when she got sick.  Her eyes were still big and bright, she had way more control of her facial expressions, she was less puffy.  It is just heart breaking.  Poor Halea, felt horrible.  It was just one of those moments when my guard came down, and I just wished that things were different.
I quickly tried to pull it together before everyone arrived.  No one likes a party pooper.  I was a little nervous because some of the family hasn't seen Tatum since she got sick, so I am sure it was a shock.  One of our nephews (you know who you are Travis!) and his wife just had a little baby girl.  It was crazy to see her and see how strong she is and how much she can control her movements.  It breaks my heart for poor little Tatum.  What a miserable reality to not be able to move anything voluntarily.
I made a trifle so that I could at least put a little bit on Tatum's tongue so she could taste her "cake".  She was pretty disinterested, but it made me feel better:)
I am pretty sure I kiss Tater bug a million times a day.  She is probably sooo sick of it.  Too bad!
 I wanted to get a picture of her adorable teeth.  She wasn't too happy to share, but this is pretty good.  You can see the cute little gap!  Love it.
Halea was even able to capture a quick smile today.  They have been far and few between these past several days.  We had to work really hard for this, but it was worth it.
Hilary sure enjoyed the ice cream and the accidental topping that her uncle brought!
I couldn't quite get Hilary to cooperate for a cute picture with her and Tatum together.  I thought it was cute that they had almost matching dresses on.  One was a gift for Tatum, Hilary's was one I picked up at Costco on Saturday.  When I got Hilary's home I was excited that they sort of matched.  Adorable.
Tatum was worn out from all of the partying.  She seemed to do well through all of the chaos.  I wasn't sure how she would react.  She seems to thrive in chaos, hmmm?
Overall a great day.  Love this little lady.  Countdown to Primary Childrens continues, 2.5 days!