Thursday, August 27, 2015

A Blanket and a Mask

"If God exists, why does He allow so much evil?"

That is a question for the ages.  It is asked in sorrow when we look upon a village ravaged by war and famine.  It is yelled in anger as we helplessly watch horrendous things happen to others.  It is asked in argument by people seeking to tear down those who believe in Christ.  It is whispered in despair by believers who have faith but are struggling to make sense of atrocities that are shown on the news every day.

It is a valid question:  if a loving Being who has all power exists, why does He allow evil to happen?  Why doesn't He just take away the pain, the evil, the destruction?  Why doesn't He protect us from the atrocities that occur?  Why doesn't He remove war, disease, rape, hatred, and pain from the earth?

The answer is not a simple one, but I understood it better one morning with a blanket and a mask.

Our daughter Lizzy just turned two a month ago.  She is so bright, and loves to talk. She is so much fun, so happy, and is so full of life and energy. She has a strong but sweet and loving personality. She can count to 10, say the beginning of her ABCs, has a better vocabulary than me, knows several shapes, and just loves to learn. She can often be found reading to her dolls and stuffed animals, which she loves to hug and kiss. She always has a smile and a hug, and she loves to help sweep and do chores. She loves Jesus and church and nursery. She loves to play the piano and sing, especially when it is church or Primary hymns.


Eight months ago, however, this wasn't quite the case.  She was still her happy self, but her vocabulary wasn't developing as quickly as other kids, and she had a difficult time sleeping.  After her third ear infection in four months, we were referred to a specialist who suggested we put tubes in her ears because they weren't draining properly.  We scheduled the surgery, which was relatively simple, and we waited.

On the morning of, we awoke early to be at the surgical center at 6:30a.  It was snowy, so Lizzy was bundled up and in her pajamas.  They told us that she would probably be sleepy the rest of the day, even though she would only be under anesthesia for about 10 minutes.  I brought toys, coloring books, and her favorite kitty to have while we waited.  I was nervous for her because she had always been afraid of the doctor.  Phillip gave her a blessing the night before that she wouldn't be scared the entire time and that she would feel comforted when she was scared.



I tried to explain to Lizzy as best as I could about what was going to happen, but how do you explain to an 18 month old exactly what was going to happen in a way that she could understand?  She knew we were going to the doctor and that they were going to help her ears feel better, but that was about as much of the concept as she could grasp.

We went back into a surgical waiting area and changed clothes.  Lizzy wore a hospital gown, and I put on a hair net and a cover so that I could go back with her until the anesthesia kicked in.  She looked so small in that big gown on the big hospital crib.




As we waited for the procedure to begin, Lizzy laughed with the nurses, played with her toys, and colored.  I was relieved that she was enjoying herself so much.  She barely even fussed when they took her blood pressure and put a pulse ox on her toe (which in the past had always terrified her).




Eventually, they called us back to the surgical room.  I walked slowly down the hall with the nurse, Lizzy in my arms.  She was still laughing and giggling, but my heart was pounding with nervousness for her.  I kept telling her that we were going to fix her ears now, and she was excited about that.  I reminded her that it might be a little scary, but that I was going to stay with her the entire time.

The doctor and nurses were all gowned and masked, waiting for Lizzy.  Because she was so little, they decided to swaddle her in a blanket, put an oxygen mask on her face to temporarily sedate her, and then insert the IV with more sedation that would be used during the surgery.

As I lay my precious baby on the table, I saw her eyes fill with fear.  The nurses began swaddling her, pinning her arms to her sides.  She started thrashing around, desperate to escape.  It took two nurses to hold her down while I stroked her hair and sang softly to her, trying to calm her down and ease her fears.  Her eyes desperately met mine and she started crying, "Mama!  Mama!"  She burst into terrified sobs at the sight of the mask coming towards her face, tears streaming down her cheeks as she looked at me in scared confusion.

Although it took less than a minute, the process of sedation felt as if it took hours.  I felt helpless as I watched my tiny girl, but I knew that this surgery was the best thing for her.  It would allow her to grow and develop, to not be in pain, and to ultimately be happier.  It would all be over soon, and those few moments of fear and distress would be a thing of the past.  But right then, those few moments felt like an eternity to her.

After several seconds of breathing the medicated oxygen, Lizzy peacefully fell asleep and I was asked to leave the room for the waiting area.  I wanted to stay, but I knew that I couldn't.  Instead, I left her in the capable hands of the doctor and nurses, knowing that soon I would be able to hold and comfort her for as long as she needed.


After about fifteen minutes, the nurse came to tell me that the surgery was over and that Lizzy was in recovery.  I quickly went to her bed and found another nurse holding her in a rocking chair, feeding her a bottle of milk.  I took my beautiful baby in my arms, and we cuddled for as long as she wanted.  After a bit, she was ready to go home.

In the days and weeks that followed, Lizzy rapidly blossomed.  Her vocabulary tripled in just a few days (along with her pronunciation), and she began sleeping through the night and during naps.  She no longer pulled on her ears, and she became even more vibrant and alive than she had been before.  I am so grateful we made that decision, because it helped her realize her full potential.

As we see the horrors that occur in this life, we often do not realize that this life is not all.  Elder Boyd K. Packer teaches that we are merely in the second part of a three act play:
"There are three parts to the plan. You are in the second or the middle part, the one in which you will be tested by temptation, by trials, perhaps by tragedy…. Remember this! The line “And they all lived happily ever after” is never written into the second act [of the play]. That line belongs in the third act, when the mysteries are solved and everything is put right… Until you have a broad perspective of the eternal nature of [the plan], you won’t make sense out of the inequities in life. Some are born with so little and others with so much. Some are born in poverty, with handicaps, with pain, with suffering. Some experience premature death, even innocent children. There are brutal, unforgiving forces of nature and the brutality of man to man. We have seen a lot of that recently. Do not suppose that God willfully causes that which, for His own purposes, he permits. When you know the plan and the purpose of it all, even these things will manifest a loving Father in Heaven."
In the first act, we lived God in Heaven.  We did not have bodies, and we were not like Him.  The only way for us to grow and develop into reaching our full potential was to come to earth, to gain a body and to be tested in order to grow.  God gave us agency so that we could choose for ourselves just how far we would develop.  Like I did with Lizzy, our loving Father sat down with us and explained this life to us.  He told us it would be hard, and He showed us exactly what we would pass through.  He also gave us a glimpse into the third act and explained all of the magnificent things we could become if we did well on earth.

In the end, God did not make the decision for us.  Our agency began before we were even born.  He showed us the good and the bad, and He let us decide if we wanted to follow His plan to be like Him.  Most of us chose His plan, even though we knew it would be hard.  The scriptures tell us that "shouted for joy" at the thought of coming to earth.  We knew that the hard parts would be worth all that we could gain, and we were excited to do it.

When Lizzy was on that table, she forgot about everything I had told her about the good that would come from the surgery.    Similarly, on this earth, we don't have have memories of God's explanation.  That is part of the test:  to grow and develop our faith and our relationship with God.  We have been given "doctors" and "nurses" to be with us during this surgery to remove our imperfections.  Tools such as the light of Christ, prophets, and especially the Holy Ghost help us succeed in this life in growing as much as we possibly can.  However, we must be deliberate in seeking for those tools and listening to them.

I sat and comforted Lizzy as best as I could by stroking her hair and singing to her, but the fear was overwhelming and drowned out my efforts.  It is so easy in this life to allow our fears and sorrows to block our ability to feel our Heavenly Father's love.  Sin, anger, despair, and heartache can be tools in the hands of the devil to keep us from being able to feel "hugs" from our Heavenly Father.



In these times, we beg our Father in Heaven to stop the pain and sorrow.  We ask Him to alleviate the suffering, because in our spiritual youth, we cannot remember our commitments or the glory that awaits us.  However, our Father does remember.  He promised us that He would do all that He could to bring us back to Him, just like I have promised Lizzy to always love her and take care of her.  So in spite of our pleadings, sometimes it is necessary for God to allow evil things to happen in the world:  because we asked him to do so.  We told Him we would do anything to be able to return to Him, and He is keeping His part of the promise by leading us back to Him, even when that path is hard and difficult.  It may seem like forever to us, but to Him (and to us one day), it will just be a brief moment in eternity.  "Almost there.  Almost done.  Just hang on for a little bit longer.  It will all be over soon," He seems to tell us.

And when this is all over, when we have gone through the hard part and come out of the sedation of the mortal world and the veil of forgetfulness, He will be waiting for us.  He will hold us and comfort us for as long as we need.  Then, if we were faithful in this life, we will move forward together, reaching our full potential as sons and daughters of God, the most powerful Being in the universe.  This life of sorrow and heartache will be like a distant bad memory, overshadowed by the pure joy and happiness that will come from living with our Heavenly Father.



So hang in there.  When we see evil and we want to give up in despair, just hang on.  Listen for the peace and reassurance of the Holy Ghost, whispering words of comfort to our souls.  Because we are not alone, and we have Someone watching over us who loves us.  There is a purpose to all of this, and if we remain steady and faithful, all of these sorrows will be swallowed up in the Savior and His Atonement, and we can know that one day, we will have a fulness of joy and peace.

Monday, May 11, 2015

FHE Lesson of Nephi

Does anyone remember the old-school flannel board lessons that we used as kids for FHE and Primary?  They were so great!  I found links to the them on Pinterest, but they weren't as interactive as I remembered.  They were basically just pictures from the illustrated scriptures every LDS family had, then laminated with velcro stuck on the back.

I wanted to make some FHE lessons that were a bit more involved for the family members.  I searched everywhere, but could only find a few resources that were what I wanted.

This website, the Red Headed Hostess, has paper dolls and backgrounds that are amazing!  They require a lot of work, though, to print out each piece (hair, clothes, etc.), but you can tailor them for each story.

Then this website, My Heart Vine, took the Red Headed Hostess's paper dolls and made some specifically for 1 Nephi, which is what I printed, colored, and laminated.  (I absolutely LOVE my laminator that my husband got me for Christmas last year!)  The links on her website for the printables don't work (they aren't free), so she also has them at her other website here.

Here are my final products.  I am pretty proud of them!





Sunday, May 10, 2015

20 Parenting Tips from a Prophet (printable)

Today in Relief Society, our lesson was from chapter 15 of the Ezra Taft Benson manual, "The Sacred Callings of Fathers and Mothers."  As part of the lesson, President Benson gives twenty specific ways that mothers and fathers can magnify their callings as parents: ten for fathers and ten for mothers.

I love lists.  I would have been an amazing Pharisee:  How many footsteps am I allowed to take on the Sabbath?  What am I allowed to eat or not eat?  What is the proper procedure for being cleansed from my sins?  Seriously, the Law of Moses would have been a piece of cake!

The ambiguous statements like "be humble" and "attend the temple often" are more difficult for me.  This is why I got a degree in math!  Things are simple and straightforward.  I have a hard time working towards goals that don't have steps or concrete pieces.

In order to help myself and my engineering husband, I took these commandments?  hints?  suggestions from President Benson and made cute printables to hang on our bathroom mirrors to remind ourselves each day what we should be working towards.  Some of these are a tad on the vague side ("truly love your children), but others are concrete things that we can do together.

Here you go!  Happy parenting!




Friday, January 2, 2015

"As Thyself"

Jesus Christ taught that we are to love our neighbors as ourselves.  I have often thought this to refer to quantity:  we should love our neighbors as much as we love ourselves (and also the reverse, make sure we love ourselves as much as we do others - but that is a conversation for another time).

I recently came to the realization that this could mean something else:  that we should love others in the same way that we love ourselves.  Sometimes we have a tendency to be too hard on ourselves, true, but at the same time we often give ourselves the benefit of the doubt a lot of the time.  We understand ourselves.  When we fall short, we recognize the mitgating circumstances (sick child, emergency, etc.) We see what is going on the background, behind the scenes, instead of just what is in the front on center stage.

As a society, we are often too judgmental of others.  We get frustrated when someone cuts us off on the road, saying how rude they are, instead of giving them the benefit of the doubt - maybe they didn't see us, or were in a hurry?  Perhaps the person sloppily dressed at Walmart was up all night with a sick friend and simply did not have energy to put on a fresh set of clothes.  There is a chance that the child at the library who ripped your child's toy out of their hands has a special need that can't be seen as opposed to lazy parents who don't enforce good manners.

Having an "invisible disease" has often put me on the receiving end of judgments.  Many are simple ones that I can blow off, like getting a dirty look when I use a handicap parking spot (I do have a sign) or hearing, "You don't look that sick!"  (I choose to take this latter one as a compliment.)

There are some judgments, harsh ones, that are more difficult to shake off and not take personally.  The biggest one, perhaps, can be summed up in the following conversation:

"Tiffany, hi!  It's been a while!  How are you doing?"
"I'm doing well, thanks.  It's been a bit busy lately."
"I heard you were sick.  What was going on?  Are you feeling any better?"

*****And this is where I stop.  More often than not, if I answer anything more than, "I was just under the weather, but I'm better now," eyes start glazing over, watches are glanced at, and vacant expressions look back at me.  People ask because they care, but at the same time, they don't really want to know.

I've learned this the hard way.  I can't count the number of times I've heard people tell me the following:
"You let your disease define you."
"You talk about your health too much."
"Maybe if you didn't focus on your health so much, you'd get better and not notice it."
"What's it like to be sick every single day?  I mean, really?.....Yeah, that doesn't sound too bad - no worse than being pregnant or being a mom."  (For a good analogy of this, see the Spoon Theory.)

And this last, very painful one:
"You should really talk to Sister So-and-so.  She has so many hard things in her life, real trials, in addition to her health.  But you'd never know it from talking to her."

I have heard this many times.  It seems as though in our society, the quality of "suffering in silence" is one to be admired.  These individuals are viewed as having an internal strength, with no need of confidences or outside support.  They are held up as an ideal.  Every time I have heard someone speak highly about someone else, I promise myself that again, I would start keeping things to myself. But this is very, very wrong.

Yes, it is admirable to not complain.  But talking about something and complaining are two very different things.  How are we supposed to serve someone if we don't know that they are going through a trial?  How are our burdens supposed to be lifted if no one knows to lift?  How are others supposed to get blessings of service if we do not allow them the opportunity to serve?

Most importantly, how are we to learn empathy if we cannot relate to another's experience?

How can we truly love someone the way we love ourselves if we don't know them the way we know ourselves?

Every time someone has rolled their eyes at me when I answer their questions about my health, I promise myself that I am not going to do it again.  Yet each time, I feel the Spirit tell me that I need to inform, I need to share.  My Patriarchal Blessing is also very explicit about this.  It can be painful for me to be so open; others see my vulnerabilities, and I know that I am being judged.  Judged for "complaining" too much (when really, I promise I'm not - I'm actually very grateful for my trials).  Judged for "not doing enough."  Judged for being "too weak."  Judged for any number of reasons.  It's painful, and yet I feel strongly that I need to

I've had a few experiences over the years where I've needed outside help - especially after having Lizzy and not being able to just go into the hospital without coordinating her care.  It's a big reason why we moved to CO - to have help from family.  One experience stands out to me where I asked a friend to go with me to the hospital while someone else watched Lizzy (my husband had an important work deadline).

I tried to talk about how I was feeling, but each time I did, she brought up another example of someone who never complained about their health.  I eventually stopped, and tried to just carry on a conversation.  I've learned when I feel that sick and hurt that badly, I can either laugh or cry about it.  I choose to laugh - it makes the time go more quickly and doesn't give me a headache.  :)  She eventually just started making phone calls to other people and did not participate when the nurses or doctors came in.

Later, I found out this person has told a mutual friend that she thought I was pretending to be sick on purpose, that I was addicted to pain medication (because I asked for it once and she happened to hear it, but she did not hear the half-dozen times I asked about tests), and that I just didn't want to take care of my daughter and was looking for a way out.  I was heartbroken.  I was trying to so hard to not "complain" to her during her visit and talk about how I was really feeling (because ).  Yet in doing so, she was unable to relate to what I was going through at all and even think that I was doing on on purpose to get attention and out of responsibilities.  She had known me a long time, was someone I considered a good friend, and yet was so quick to judge.  I am still working on not being offended by this.

On the other hand, the other day a friend came over to visit after one of my surgeries.  I apologized that I wasn't feeling up to doing what we had originally planned because I was having an allergic reaction to the pain medication.  She looked at me in astonishment and said, "Tiffany, you are the strongest person I know!  Every time I think that I have it hard or that I'm in pain, I tell myself that if Tiffany can do it, so can I!"

And THAT, my friends, is why I am open and honest and share what I am going through.  Not to complain.  Not to get attention.  But to help people see that if they are going through something difficult, they are not alone.  There is someone else who understands.  And through that, they can hear me share my testimony of the Savior, who understands all of us.  I want people to consider another way of life, to see it from someone else's perspective.  I want people who are hurting or who are scared to know that they are not alone.

Some of the most rewarding experiences I have had come from a phone call or an email where someone is having a trial (most often health-related) for the first time, and they are scared and don't know where to go or what to do.  I am grateful for the opportunity to point them in the right direction (call this type of doctor, etc.), so they don't feel so helpless and lost.

All of us have difficulties.  Some are different, some are similar - but in sharing them (not complaining, but sharing) we can help others who may eventually have to walk through similar paths.  We can act as guides, and we can bear testimony of the times that the Savior has helped us on our walks.

My whole purpose of sharing what I go through is so that someone who is struggling with something similar can remember my struggle, get strength through it, and then go on to further rely on the Lord through the rest of the journey.  In turn, I try to seek out others' stories.  I gain strength from hearing about what they've conquered.  It causes me to love them more, which is the second great commandment.  I am less likely to judge, less likely to be offended, and less likely to resent someone who I understand.

Tuesday, August 19, 2014

August = Crazy Month

"It was the best of times, it was the worst of times."

Lol, that's the perfect way to describe my birthday month (August):  amazingly good and intolerably bad.
  • First, at the end of July and into August, I was hospitalized for a UTI (Urinary Tract Infection).  This is my third time this year with it, all due to the rectovaginal (RV) fistula that I have.  Some stool leaks through the fistula and ends up causing the infection inside my bladder.  Since I have had c. diff about eight times in the last few years and had a fecal matter transplant in April to cure it (the only three antibiotics strong enough to kill c. diff stopped working), we didn't want to mess up my gut flora.  I don't absorb pills very well at all due because of Crohn's and gastroparesis.  We usually try a month of 3-4 different, ineffective antibiotics, cause a flare of c. diff, and then hospitalize me to get IV antibiotics.  This time, my amazing PCP, Deanna Tolman, just had me admitted after a few days of antibiotics so that I could be on them for as little time as possible.  I spent 5-6 days there and was released on a Friday evening.

  • Six days after being released, I had surgery to remove a piece of the inside of my labia because a flat mole down there kept growing back and becoming more and more atypical/abnormal/pre-cancerous each time.  The last time, when I had it just removed in their office, they couldn't get the lidocain deep enough so I felt them cut and cauterize the wound (just a tiny, 1 cm incision).  So this time, I had it done under sedation because it was an inch and a half incision stitched up.  I couldn't wear tight pants or even underclothes for a few days because anything touching it was very painful.

  • Finally, some good times!  The Wednesday following the surgery, we had a family reunion with my immediate family (I am the oldest of 10 kids, three of us married, two with a baby each).  We went to Steamboat Springs and stayed in a large house together.  It was AWESOME!!!  Some of my family members had some exciting news, and we all got to spend time together.  We played games, hiked, swam, and even did mani/pedis together (Mom and the older girls).

  • The day after I came back from the family reunion (Monday the 18th, yesterday), I had a surgery to plug my RV fistula.  It was supposed to be simple and relatively painless, but it turned out that the fistula was on the base of the sphincter muscle and near a bunch of nerves.  It was so painful (and no oral meds work on me) that I went to the ER and got admitted for pain control (I am at Sky Ridge right now).

  • On Thursday, I will have my next Remicade infusion.  These are so similar to chemo, that that's what my insurance company calls them on the Explanation of Benefits.  I always feel crummy for a few days afterwards.

  • Next week is my birthday on the 26th!  But Phillip is going to be out of town for that whole week.  I am going to miss him just so much!!!

In spite of all of these things, I am extremely grateful for the gospel of Jesus Christ.  I could not have gotten through all of these trials without Him by my side.  I KNOW that He is real, that He loves me, and that all of these experiences are for my learning and to grow closer to Him.  I am grateful for His patience with me and love for me.  I don't deserve it, but He loves me anyway.  At times I feel alone and am hurting, I can literally feel His arms around me, hugging me, and helping me to move forward.  And He is there for each and every one of us.

Wednesday, April 23, 2014

Having a Voice in the Medical Community

One of the reasons that we picked up and moved from Houston to Denver was because of the severe lack of medical care that I was receiving.  I almost died on a few occasions, all because a few doctors put their pride and arrogance above my viewpoints and what was happening with my body.

It was like the child's game of hot potato:  the potato quickly gets passed around in a circle, and when the song is over, you hope that you're not the one left holding it.  These doctors were passing me around from one specialist to another, back and forth to each other, all the while hoping that when the "song ended," they wouldn't be the ones stuck with me.  One hospital and group of doctors actually refused to work with me anymore because I was too difficult and they didn't want to end up stuck with me.  They were irrationally angry with me because what they were doing just wasn't working.

This was extremely disheartening.  I felt helpless, scared, and alone.  There was no one to advocate for me, and no one was listening.

There is a project called Rare Patient Voice. They do surveys and interviews for people with rare diseases about their medical care, quality, and services. This is not just for people who have the condition, but also for their caregivers as well. Each time you fill out a questionnaire or survey, you get a bit of financial compensation as well.  When you sign up, you also get a $5 gift card for Amazon, as does the person who referred you.

These surveys pay well.  Recently, Ulcerative Colitis patients earned $250 cash (well, a check) for completing one survey.  I personally



The information from these surveys is used to improve the healthcare systems.  They work with pharmaceutical manufacturers, advocacy groups and charitable organizations, in order to change healthcare one patient at a time.

I am passing this along, not just because of the gift cards, but also because after all of my experiences with the medical community in the last two three years.  I have been hospitalized 30 times, so I have met many people who have had a wide variety of encounters with the medical world. I think it's extremely important that those experiences be heard. There is a lot that is wrong (and right) with health care, especially for those who have less-common conditions. I'm hoping that this is one way for voices to be heard so that changes can be made.

When you first sign up, you get a $10 Amazon gift card.  (Note:  They now give $5 gift cards instead.) Then anyone who signs up and puts your name as a referral, you both get another $10 gift card. I got $20 because I signed up and then my husband signed up under me as my caregiver. I have taken several surveys, as well as phone interviews and have been compensated well:  the most was $150 for a one hour phone conversation about a picture I drew depicting my life's journey!  I also have not received any spam or been contacted inappropriately through this.

So I wanted to pass this on to you and invite you to sign up. Even if nothing comes from the surveys themselves, at least you get a free $10 gift card if you qualify. I haven't gotten any spam, but if that is something you are worried about, you can set up a free second email address and use that.  That's what I did - I also use that email address for Viewpoints.com and Swagbucks.com, through which in the last year I've gotten close to $300 in free Amazon gift cards - if you're interested in that, ask me about it.  (To sign up for Swagbucks, please use THIS LINK HERE)

SOME of the MANY diseases that qualify as "rare" are:
Bleeding Disorders
Multiple Sclerosis (MS)
Cystic Fibrosis
Sickle Cell Disease
Huntington’s Disease
Pulmonary Arterial Hypertension (PAH)
Waldenstrom’s Macroglobulinemia (WM)
Lupus
Gaucher
Duchenne Muscular Dystrophy
Hepatitis C
Crohn's Disease/Ulcerative Colitis

If you think that either you or the person you care for has something that qualifies as rare, you can apply and then explain why you think you qualify.  There are so many more conditions out there that are more rare than those listed here.

If you do decide to sign up, please make sure to put Tiffany Thomas with an email address of scifigal2k@gmail.com as your referral so I can get credit for it. You sign up at https://www.rarepatientvoice.com/sign-up/

Remember, this is about having a voice.  A voice for those who are to ill to speak for themselves.

Thursday, January 23, 2014

Not today, but tomorrow.

As I was scrolling through my facebook feed today, I found myself extremely jealous of every single stay-at-home-mom (SAHM) with pictures of their kids or complaints of messes or cute things said or done.

I want that.

Two nights ago, I came home from my 5th hospitalization in 3 months.  This doesn't include the additional handful of ER visits.

Yesterday, I was so tired and sick I could barely wake up when Lizzy woke up to eat and to pump.  Then I had to put her in a walker for an hour and half while a nurse came to give me an IV and teach me how to do it myself for the next week.  I then had to call Phillip to come home early from work because I was so weak and shaky, I almost dropped Lizzy and passed out several times going up and down the stairs.

Today, I had to let Phillip take her to someone else's house to take care of her so I could try to sleep some more and "get better."

I hate those words.  I hate it when people tell me to "feel better soon."

Because honestly, I'm not going to.  I have chronic condition.  So even if I make it into the most awesome remission ever, it won't last because the price I pay for remission is an immune system so compromised that just a cold and a yeast infection led to these last three months of hell.

I am so tired.

I am tired of not being able to be a good mom.  Of not being able to raise my daughter.  Of not being able to play with her even when she is home because I don't really have the energy to get out of bed, so we just play on the bed.  Of not being able to take care of her half the time because I'm in the hospital and can't be with her.  Of her crying at night because Mommy isn't there to hold her and she doesn't understand.  Or worse, that she'll get used to me not being around and won't be able to tell her Mommy apart from any other woman in the ward.

I'm tired of missing so many "firsts" because they're done with someone else.  And there's no one there to take pictures or realize it's her first.  Of worrying if she's developing on time because so often I don't get to take her out on walks or read books because I'm tired.  Of worried that she's being ignored or put in the corner while whoever has her is doing their own thing with their family and kids and cleaning and whatever.

I find it heartbreaking and very telling that I have a bouncy seat in the bathroom for Lizzy.

I'm tired of not being able to be a support to my husband.  Of him having to be both Dad and Mom.  Of him having to not only work full-time, but then come home and make dinner and do laundry.  I try, I really do try, but most days I can't.  And he can't.  So the house is a mess, and I hate having to look at it because it's just another reminder of how much I'm failing.

I'm tired of hospital bills.  And doctor bills.  And watching our budget not balance well because we spend at least a thousand dollars a month on medical expenses (literally).  I was tutoring to try to help, but I couldn't these last few months.  I'm tired of being a drain on the budget and not a contributor.

I'm tired of not being able to go to church.  Of not being able to do callings and having to bail last-minute.  Of not being able to make friends in the neighborhood and share the gospel and go to events.  Of forgetting to read scriptures and say prayers because I'm walking around in a fog and habits and routines get so messed up while in the hospital.  Of being a burden on my family and my ward, and of being just another charity case.  Of looks and eye-rolling and sighs when once again we have to ask for someone to watch Lizzy.

I'm tired of being in the hospital with doctors and nurses who don't care.  Of being all alone there and having to fight my own battles when I'm sick and tired and in pain.

Oh yes, I am so tired of the pain.  Of hurting all the time.

I know one day it's going to get better.  I know that Heavenly Father is there and supporting me.  I have seen so many miracles and tender mercies.

But today, it's just hard.  I'm jealous.  I'm tired.  Today, I just want to cry.  So I am.  I'm spending the morning having a pity party and crying for myself and my husband and my daughter.  It's not fair.

Tomorrow will be brighter and better, and I'll move forward with renewed determination to get through.

But not today.  Today, I just want to be able to feel sorry for myself and not have to apologize to anyone for it.  To be selfish and self-centered.  To let it all out - to let out the hurt and frustration and anger and sorrow and pain.  Because it all builds up, and today I just don't have the energy to hold it back or reason through it.

But I will tomorrow.  Just not today.  Today, I'm just going to hold on to Petey (my stuffed lion Phillip gave me my first hospital stay of our marriage) and cry.  Wait for a lady in the ward to bring Lizzy home to me in an hour, then for Phillip to come home a few hours after that, then get an IV going.  And pray tonight's storm cancels work for him tomorrow so we can be home, the three of us, and heal.  Because we need that.

But until then, this is my time to grieve.  To mourn.  To cry.

Sunday, January 19, 2014

Lizzy's Feeding Journey

My lactation consultant (LC) asked me to write a blog post detailing the difficulties that we've had with breastfeeding and getting Lizzy to eat.  She wants to be able to share it with other families who are struggling as an example of a success, because Lizzy has never had formula a day in her life.

Disclaimer:  I do not judge or think less of parents who use formula. Sometimes the baby needs it because of food allergies.  Sometimes the mom doesn't respond to the pump very well and has a low supply because of it.  Some mothers are on medications that pass through to breast milk and are harmful for the baby.  At times, some babies are too sick and need the weight gain that comes better through formula than breast milk.

At the end of the day, we can all agree that breast milk is best overall for the baby.  There are antibodies and nutrients in there that no amount of formula can quite make up for.  This blog post is designed to give encouragement and hope to those who are going through feeding difficulties and are ready to throw in the towel.  I hope that I can inspire and uplift those who are struggling but want to continue.

Lizzy was born with a severe posterior tongue tie and could barely lift her tongue off the bottom of her mouth because it was attached all the way across.  I also have flatter nipples, so between the two, Lizzy was not able to latch on without a nipple shield.  Even then, she had a difficult time sucking and eating.  The shield began to be extremely painful, and I would have to switch sides with Lizzy about every 5 minutes because the pain was so intense.  The problem with this is she developed a foremilk-hindmilk imbalance and was only getting the low-fat part of the milk.  This can lead to weight loss, and she was having lots of green diapers.

 Look at how little she was!  She weighed 4.5 lbs.

After two weeks of this, we went to see an LC, who has turned out to be a strong support and a good friend through this entire journey.  I am so grateful and blessed that she was the one who was assigned to us:  she is the head of the lactation department at Texas Children's Pavilion for Women, and was extremely knowledgeable.  It was she who diagnosed the tongue tie, which the regular doctors weren't able to fully figure it out when Lizzy was first born.

Normally this would require surgery and anesthesia to fix, but thankfully my LC knew of a pediatric dentist who could it with a laser cutter.  There was only one in the city of Houston, and I found out later that there aren't very many in the U.S. who can do it.  I feel like it was a miracle from Heavenly Father that this particular dentist was not just in Houston, but only about 30 minutes from our house.

We took Lizzy in right away; at this point she was three weeks old.  To make a long story short, the laser cutting went well (and by that, I mean it was horrible and worse than shots, but it worked).  After three weeks, however, we noticed that it had re-attached and we had to go back a second time.  For this entire story, please see this blog post I wrote.  Finally she completely healed, but at this point she was 9 weeks old and was so traumatized by our attempts to breast feed that she just cried and cried whenever she saw my breast or her lips touched my skin.  This time period was probably one of the darkest, most heart-breaking times of my life.  It's all detailed in that blog post.  It was traumatic for both of us, but I also learned a lot about the Savior, my Heavenly Father, and Their love.

Throughout all of this, I was really hoping that we would eventually be able to latch on.  I did not want to create nipple confusion, so we syringe fed her milk that I pumped - she would suck on one of our fingers while we used a syringe to slowly push milk into her mouth through the corner.  We got a pump through the insurance company, and every time she ate, I would pump afterwards.  This led to me having a great supply, and I was making almost double what she ate!  She would eat about 16-20 oz per day, and I was pumping around 45 oz.  We bought a deep freezer and began storing the milk in there.  By the time Lizzy was 4 months old, we had frozen about 1500 oz of milk (about 60 days' worth)!



Feeding Lizzy with a syringe.

This whole part was very difficult, though.  Each syringe only held about half an ounce of milk, and she would eat 3-4.5 oz each feeding.  It was a time-consuming process, and it took her about 30-60 minutes each time she ate.  At night, it was always an hour long because she was tired.  This was especially difficult for me because she would wake up, I would get her syringes ready (15 min), feed her for an hour, put her back to sleep (15 min), pump for 30 minutes (that's how long it takes me to empty), and then clean up by washing all the pump parts and syringes by hand (15 min).  This whole process would take almost 2 1/2 hours, and then I would only get 30-45 minutes of sleep before she woke up again wanting to eat.

For about two weeks I did this until I was so completely exhausted I had a breakdown.  One of my mom's friends, an extremely dear woman whom I love, flew down from Denver for a week (her husband is a pilot and her kids are all grown) to help me out.  She would get up and feed Lizzy at night, and I would pump during that time.  It was amazing!  All of a sudden, I was able to sleep in two hour blocks instead of 30 minute blocks!  When she left, I asked Phillip if he wouldn't mind taking over the nighttime feedings while I pumped.  He is such a dear, dear man - he didn't even have to think about it.  He just did it, without complaining or murmuring at all.  He never threw the "I have to work full-time" card at me, which I love him dearly for.



Anyway, by the time Lizzy was healed and it had become clear to us that she wasn't really going to latch on anytime soon, we had to start looking at other options than syringe feeding.  She had gotten a bit "lazy" with it  - her suck was really weak, and she just would lie there with her mouth open, waiting for us to just push the milk in.  This was a problem because it would cause difficulties with solids and speaking later in life.  We saw an occupational therapist, who gave us some exercises to do and suggested we start using a bottle.

The bottle we settled on was the Medela Calma bottle.  The reviews showed that it was the best because it had a series of chambers that opened to allow milk to come through the nipple ONLY if a vacuum was created.  This mean Lizzy had to actually suck.  She was pretty angry with it the first time we used it, but she figured it out after about 10 minutes.  It turned out to be worth the expense (about $20 for 1 nipple and 2 8-oz bottles).  Her mouth and tongue are a lot stronger now - she can now finish a 6 oz bottle in about 10 minutes, whereas before it would take her over an hour to get 3-4 oz down.

Lizzy using her new bottle.
Around this same time I started having symptoms of thrush in my breasts (itchiness and red, shiny nipples).  I just ignored it because I didn't want the hassle of trying to have to go to the doctor.  I didn't have a car, and we were trying to save money.  I got a cold, though, that started to turn into an ear and sinus infection.  Because of my Crohn's Disease and having no immune system due to my Remicade infusions, infections can get bad quickly in me.  I had c. diff. three times in 2012, though, so antibiotics are now only used as a last resort.  Instead, my primary care physician (PCP) gave me a week of prednisone to try to lower the inflammation and let everything drain out.

I hadn't told him I thought I had thrush, and what I didn't know is that prednisone will make yeast grow completely out of control.  Next thing I knew, within about two weeks, the thrush had gone systemic.  It was in the milk ducts, making my breasts burn and ache.  The areola was completely red, raw, and bleeding every time I pumped.  I had white patches in my mouth, as well as a yeast infection.  I put a call in to my PCP, who gave me two weeks' worth of diflucan (an antifungal).  After a week, though, I was feeling worse so he admitted me to the hospital so I could get IV antifungals for a week or so.

Visiting Mommy in the hospital.

Through all of this, I kept pumping.  We checked with the pediatrician and LC each time I got a new medication to make sure that it was ok to still give Lizzy the milk.  Surprisingly, very few common medications are bad enough to have to "pump and dump."  I also downloaded the app LactMed, which gives information on how medications affect breastmilk and also milk supply, among other things.

Two weeks after I got discharged from the hospital - about the middle of November - I still wasn't certain the thrush symptoms were gone, but my PCP said it was fine.  I then promptly got influenza, in spite of having the flu shot the month before.  Luckily, I did not have to hospitalized for this.  I did have to wear a mask for a few days, which Lizzy hated.



The next weekend, I got mastitis really bad, probably as a leftover from the thrush causing so many bleeding cracks in my nipples.  I still had one that would re-open and bleed a bit each time I pumped.  The oral antibiotics were not clearing it up, so I had to be hospitalized again until the day before Thanksgiving.  We then made a quick trip to Denver, where I had to go to the ER to make sure the symptoms I was having were Crohn's and not c. diff.  I had been on a lot of antibiotics for the mastitis, and antibiotics always makes my Crohn's flare up.  Since c. diff. is extremely contagious, I didn't want to be flying with it.  The test came back negative, so I was given prednisone to help get over this hurdle.

Unfortunately, however, the prednisone made the thrush come back with a vengeance.  Along with this came a problem:  the Crohn's flare had caused a perianal abscess to form.  I called my PCP because my GI was on a 2 month break as she switched practices.  He had me come in and insisted it was just a swollen gland.  I disagreed with him, but he kept insisting.  This was a Friday afternoon, and by the time Friday night hit, I was in so much pain I could barely walk.  The next morning was a ward (church) Christmas party.  Not only had I volunteered to make a couple of breakfast casseroles for it (which Phillip ended up doing, bless his kind heart), but Santa was coming!  There was NO WAY I was going to not have a picture of Lizzy with Santa for her first Christmas!






After a quick stop at the party, we went to the ER.  Yes, it was an abscess!  (Told you so!)  I was sent in for emergency surgery, which went well.  The next day (the second Sunday in December), I got an extremely high fever:  I had gone septic.  I was immediately given two different IVs with 5 different antibiotics going into me until they could figure out what bacteria was behind the sepsis (it turned out to be e. coli.).  This was the first time that I had to pump-and-dump, and Lizzy began using some of the milk we had frozen.  It was heartbreaking to watch that "liquid gold" go down the sink.  But that many antibiotics at once was just too much, the pediatrician said.

Phillip and I called our moms, and they came down from Denver and Washington to help take care of Lizzy and me when I was released from the hospital.  I was still pretty weak for a while afterwards.  Again, though, I kept pumping.  I made sure to pump my normal 5 times per day (although some days in the hospital I only did 4).  My supply dropped a ton because my health was poor and I wasn't eating much.

Grandma Lindsey
Grandma Lindsey, Aunt Annie, and Aunt Rachel
 Grammy Celeste and Zoe


Slowly I was able to build my supply back up to 35-40 oz per day.  I brought it up by eating more, drinking at least a gallon of water per day (literally), and by power pumping a lot.  This is where you pump a normal session (in my case, 30 minutes).  Then I stop for 10 minutes, then pump for 10 minutes again, then stop and start, and then stop and start (so I'll finish an hour after I finish a regular pump, actually pumping for a total of 30 extra minutes).

Phillip and I celebrated our two year anniversary on December 17, just a few days after I got out of the hospital after the sepsis.



We had a bit of a break for Christmas.  Lizzy got to see Santa, and she had a blast with opening her presents and wearing her pretty Christmas dress again.






About two weeks after the sepsis, I was still on antibiotics and prednisone, and the thrush was really coming back at this point.  I was taking diflucan off and on per doctor orders, and he had me postpone my Remicade infusion.  The problem was that the prednisone was feeding the thrush more quickly than the diflucan could kill it.  My PCP felt like some of my symptoms were related to a mental illness and insisted I try an anti-anxiety medication.  Since I don't have anxiety at all, I had a bad reaction to it and was hospitalized for a couple of days.  This was at the beginning of January.  At this point, I fired my PCP- it was the second time he had misdiagnosed me and I landed in the hospital because of it.

As you can imagine, me being gone so often and Lizzy being watched by some ladies in our church, it was all a bit traumatic for her.  She would have night terrors during her naps.  It was so heartbreaking to hear and watch.  I wanted so badly to be able to just stay at home with her all of the time and take care of her.

At times I wanted to try to latch her on - she would sometimes root around my breasts when she was tired or hungry - but with the thrush, I didn't want to pass it on to her.  Instead, she has become my pump buddy and tries to chew on the flanges!



In the middle of January I was three weeks overdue for a Remicade infusion.  I started having awful lower abdominal pain.  I had suspected for about a month that I might have a urinary tract infection (UTI) because I was constantly having to pee, urgently, and then never feel completely empty.  Once again, I ignored it, until this last week the pain suddenly became really bad.  We went to the ER

That same day I was FINALLY able to see my GI again!  I was so excited to see her, I almost cried.  As I told her everything she missed out on by being gone, she got tears in her eyes on my behalf (and Phillip's and  Lizzy's behalf, too).  She said what I had been trying to talk the PCP into:  just do the Remicade infusion to get the Crohn's under control and get off the prednisone, and then we would worry about getting rid of the thrush once and for all.

I had my infusion on Friday, but it really wiped me out this time.  I was exhausted all day Saturday, and then the thrush really went wild.  More so than we anticipated....the pain was so bad, it hurt my breasts to breathe.  They would get shooting, stabbing pains every time I inhaled.  We went to the ER Saturday night (last night) and I was admitted to get IV antifungals.  So here I sit, missing my husband and baby girl so much.  They are perfection and the most wonderful, priceless thing to me.

Lizzy is such a good, happy, well-behaved baby, and I really appreciate that a lot.  She is now 6 months old (and 2 days), and I can't believe how tiny she was compared to how big she is now!
Just a few days old.
 3 months old, laying next to one of her preemie onesies
6 months old!

Finally, I have to say that I absolutely could never had done any of this without the support I have gotten from friends and family.  I have felt your prayers on my behalf.  I am grateful for those who give up their time and other talents to help give us rides to doctor appointments and baby-sit Lizzy.

Throughout all of this, I am most grateful for my incredible Superman of a husband, Phillip.  He is my rock and strength.  I am in awe of how well he has stepped up to the plate in taking care of Lizzy, working, and supporting me.  He amazes me.  I have been so blessed to have him as my husband.  I can't imagine how hard this would be if I had a husband that murmured or complained.  He takes care of Lizzy so well - I don't have any worries about her being with "single" dad.  He is just the most incredible father.











"Camping" on the landing while the ward had a Daddy-Daughter campout 



The two left are Lizzy.  Zoe is Phillip's sister.


If I even mention that I want something, Phillip is all over it.  He is so sweet, kind, tender, and loving.


Tootsie Rolls - one of my favorites and a big pregnancy craving.  He left this for me one morning before going to work.


I can't put into words the depth of how much I love him and am amazed by him.  The words just seem so.....cheap when compared to how I feel in my heart.  I love him.  I love him more than anything and anyone in this world, and I am so grateful that we get to spend eternity together.  I found this poem online and I think it helps a little bit put into words what I want to say.

Amazing man, You
by Riggs
I never thought I'd be where I stand
It was only in dreams where I could hold your hand
I never thought that you'd be my man
I never thought I could, or would, or can

It's the things you do that make me wonder how
How we made it through
How it could be you
To love me...

And as I lie here, sitting in my bed
Listening to you breathe close to my head
I smile, I sing, I thank God you're with me
And pray that it'll last for eternity

You make me feel loved, in so many ways
You make me smile each and every day
You care for me, you listen, you're always here for me
And in return everything you are to me, I wanna be

Thank you for the good times
And even for the bad
Thank you for understanding
Everything I am

I know it's hard sometimes
But you always get me through
It's amazing what love can really do
And it's amazing that it brought me to you



Untitled
How do I begin to tell you how lucky I am
To have you in my life?

I'll start by saying what an honor it is
For me to be your wife. 

You're my best friend in the good times
And my rock in times of sorrow. 

You're the reason for sweet yesterdays
And my promise for tomorrow.

I never thought I could feel this loved
Until I became your wife.

You made this year and every year
The best one of my life.

This was our song we danced to at our wedding.  No amount of time will ever be enough to spend with Phillip.  I hate being away from him, and I love it when we're reunited again in the evenings.  He makes me happier than I ever could have imagined being.


Some fun pictures of us.  Oh goodness, how I love this man!