Thursday, August 15, 2013

Like A Toddler With A String Cheese

Yesterday Adam woke up from his nap in a mood.  You know when toddlers wake up and they decide they want everything and nothing simultaneously RIGHT NOW?  It was that kind of mood.  I picked him up out of his crib and he was doing that whiny cry and he put his head on my shoulder.  For 2 seconds.  Then he started the back arch gravity drop but not the full back arch gravity drop.  He did the initiation of the back arch gravity drop that causes you as an experienced parent to start to put them down so they can toddle merrily on their way.  Wrong move idiot.

Judge Judy saw this next part coming from a mile away.
 Responding to the back arch gravity drop cue resulted in a blood curdling "NOOOOO!!!!!  Mooooommmmommmmm!!!!".  So this is how we're going to play it.  I reversed course and scooted him back up the 1/2 a millimeter I had shifted him down because when you start playing this game 2 year olds become like highly sensitive scientific equipment capable of detecting phenomena at the molecular level.  This whole interaction may not have even occurred on any physically perceptible level, it happened so fast.  As soon as I scooted him back up he started the back arch gravity drop and around we went.  So I did what any veteran parent does who wants to teach their children to deal with their unpleasant emotions in a functional manner...I brought him downstairs and tried to distract him with a snack.  Future food issues anyone?  As long as they come with a side of cheese.   In Adam's case, string cheese.  Lately string cheese has been Adam's fave.  I won't even begin to tell you the rate at which he can put those down.

So we went to the fridge and he freaked out over opening the fridge himself.  So I tried to put him down so he could open it himself.  So he freaked out over me trying to put him down and did the super abs thing where they lift their feet higher and higher as you lower their butt closer and closer to the floor.
Like this with less attention to form and more rage.
So I opened the fridge and got the cheese and tried to set him down to open it so he freaked out and did the abs thing again.  So I just handed him the string cheese because sometimes when he's feeling reasonable he likes to try to open things himself and he tries for a short time and then he asks me to do it for him.  I figured it would just go like that.  Seriously.  Idiot.  Hold on to your hats people, it did not go like that.

Adam would put the string cheese in my face and yell: "CHISS!" which I would interpret as "Mother, please open this string cheese." and so I would start to take it from him to open it "NOOOOOOOOOOO!!!!".  sigh.  "CHISS!" Mommy attempts to open it.  "NOOOOOOOO!" SIGH.  "CHISS!!!!!"  Mommy attempts to open it.  "NOOOOOOOO!!!!" On and on and on and on and on.  Until he was in college.  Actually for like 10-15 minutes, I'm not sure.  Did I mention my Mom was watching this whole thing unfold?  For some people Karma is a b****.  For my Mom Karma is a rainbow butterfly who hands out all the candy you want.  Which is what she deserves.  She observed this whole scene with a mixture of pity and amusement, with tears in her eyes while trying to stifle a laugh.  You know what?  Right on, Mom.  I get you.  I'm sorry for every time I did that to you.  You are a saint.  A saint who gets to taste the sweet sweet nectar of revenge but takes pity on her former attacker.

What is this about?  Are you going to turn into one of those Mom bloggers who're all like "Toddlers are unreasonable jerks woe is me?  No, I won't, because it hit me last night that I am God's unreasonable toddler.  Look at this girl:
She's wearing a T-shirt and using a Pacifier!
Avery continues to grow and progress every day.  Just like I've been begging God for her to do.  She is doing really well.  In the next few days she will be moving to an open crib and she has reached the 5lb mark.  She is beginning to learn to feed from a bottle and doing so well with it she gets to try 4 times a day.  They are beginning the process of removing her from respiratory support by reducing the flow in her nasal cannula and just today they stopped giving her caffeine.  Which as an aside: I find hilarious.  Premature infants sometimes need caffeine to help them remember to breathe.  You and me both, Avery.

When they took her off of the ventilator and switched her to the air flow in the nasal cannula it was scary because her respiratory rate on the monitor didn't look perfect and predictable like a robot anymore.  It looked variable like all human activities do.  It went fast and then slow and then sometimes she would just be like "meh, breathing is dumb" and take a short break and I would FREAK OUT and the nurses would assure me everything was fine.  I'm sorry but there is nothing fine about that and I don't care how fine it is.  It's scary.  But she continues to handle it well and they continue to wean her off of support and all my prayers are being answered.

I begged God to help my little girl outgrow those machines when she really wasn't ready (CHISS!!!), and now that she needs them less and less everyday I'm getting scared about the idea of her doing it all on her own (NNNOOOOOOO!!!!).  I begged God to be able to bring her home (CHISS!!!) and now that we are moving closer to that goal I'm not so sure I'm ready (NNNNNOOOOOO!!!!!!).  Poor God.  It's a good thing he's so patient and loving.  Oh.  Right.  He is patience and love.

Adam and I did the string cheese dance for awhile.  He just hadn't felt right since he woke up from his nap.  Maybe the girls playing woke him up before he was ready, maybe he was teething, maybe his bottom was sore, maybe he just had a bunch of big feelings and didn't know what to do with them.  I held him for a long time and offered to open that damn cheese for what felt like a very long time.  Eventually, between sitting in my lap and seeing that Mom would respond with love and patience (on the outside) no matter what, Adam calmed down.  Eventually he toddled off to entertain himself for awhile.

I haven't felt right for a while and I've had big feelings I didn't know what to do with.  I asked God for things and when they seem to start happening I get more feelings I don't know what to do with.  God is so patient with me.  He loves me even when I start to turn from the very things I asked for.  He loves me even though my first instinct when things happen that I don't understand is "Where are you God?".  He knows we will do this dance until the day I die, and He sits with me and is present with me anyway.  He loves His unreasonable toddler.

Saturday, August 10, 2013

What I'm Trying To Accept About Michael's Second Wife

This is my most favorite picture from our Wedding.  My sister in law Ruth took it and I keep it in a frame by my kitchen sink so I can look at it all the time.  It's our first step into married life.  Corny, I know, but I love it.  It's sustained some water damage because it's near the sink.  I'm kinda sad it's like that but I'm proud that we've been married long enough to have a wedding photo that needs heavy duty restoration.
Today Michael and I are celebrating our 12th Wedding Anniversary.  (Are you sure Nella?  That is a really uncomfortable title choice for this occasion.)  Relax, if you're reading this it's Michael approved.  The day Michael and I got married I had all of the normal arrogance of a young bride and I was sure that NO TWO PEOPLE IN THE HISTORY OF THE WORLD HAVE EVER LOVED EACH OTHER AS MUCH AS MICHAEL AND I.  EVER.  It never occurred to me that that was not really possible.  I mean, deep down I still believe we're definitely in the top 10 of the history of the world, but I realize I may have been overshooting the mark a bit.  Many other people can be madly in love and that does not detract from how much we love each other.  Duh.  I know.  The idea that's harder to accept is that if one of us were to die, the other person could fall in love again, and that also would not detract from our love for each other.  Yuck.  I'm sorry but I'm not mature enough to like that idea yet.  I'm marginally mature enough to aspire to like it though, because Michael deserves the biggest truest love the human heart can manage.

Because of cancer I've spent some time thinking about what might happen for Michael after me.  Have you ever seen those stories on the Today Show or whatever about these married couples where they each lose their spouse to some illness and then find each other and get married and blend their families and live happily ever after?  Oh and P.S. they were able to have peace about it because one of the deceased spouses left the remaining remarried spouse a letter or video or something saying "It's OK, I love you I want you to be happy" because they are not selfish childish jerks and they are courageous, kind and loving?  I've seen them too and I want to like them but I hate them because it makes me realize I don't think I could do that.  At least not yet.  I want to be able to love Michael that much, that selflessly--but not yet, don't worry.

My "book club" can attest to the fact that this has been on my mind tormented me for a long time way before I knew I was sick and I have delighted them tortured them with hilarious monologues semi-delirious rants about just what I would do to Michael's second wife if I died.  You read that right: what I would do to her.  When I was dead.  Because I'm literally that childish and crazy.  Thank goodness I at least have the luxury of only having to navigate this second wife thing after I die.  If I had to do it when I was alive I would end up on 48 Hours or Nancy Grace.  Anyhoo, I have devoted an unhealthy amount of time to contemplating the best plan for when I meet this horrible jerk face lady.  Because I hate her hypothetical guts.  Luckily for her the whole idea is so upsetting for me I can't get a better plan together than "Play it cool when you die so God lets you into heaven and you can hang out by the pearly gates and when she finally dies and she's on her way you can lurk behind some puffy clouds or a burning bush or something and when she comes flying along with her stupid shiny new wings and her dumb holy new smiley heaven face BAM--celestial two by four upside her dumb perfectly restored head.  Then I get kicked out.  Of heaven.  Which is very bad.  So...I need some serious work and I don't mean on the plan!  I mean on me.  On my heart.

I just love Michael SO MUCH.  So much that when I really think about it I can hardly breathe.  The thought of him falling in love with someone else, even after I die, is physically painful.  I love him so much that I can't stand the thought of not being with him forever and ever amen.  He is the love of my life and the best friend I will ever have and we have been through SO MUCH and built SO MUCH and now this broad is going to come traipsing along and...and do what?  Love an amazing man?  Who deserves to be loved?  Who I promised 12 years ago to love and honor all the days of my life?  How am I loving and honoring him all the days of my life if I am begrudging him what is best for him for his WHOLE life no matter what that entails?  More than that, how am I loving and honoring him if I'm spending even one minute of the time that we are together thinking about this hypothetical woman?    

If I'm being honest, part of the reason I hate her is that if I were to kick the bucket before him and he were to remarry, that means she's walking around out there right now.  And seriously?  That's pretty threatening.  Someone could be walking around out there who Michael could love.  Ouch.  What if he met her too soon on accident?  What if we know her right now?  Well, ouch again.  But what a narcissistic fear to cling to, and how horribly disrespectful to Michael.  Aside from the fact that the only loving choice is to pray that he could find love again, I'm disregarding that Michael promised to love and honor me 'til death do us part.  So even if he did meet her before I died it wouldn't matter.  He is a good man.  He is an honorable man.  He promised to be true to me and that should be all I need to know.  It IS all I need to know.  I married a good man who promised freely to be true to me in good times and in bad, in sickness and in health.  He didn't just say those words because he was told to, he has lived them everyday for 12 years even though the bad and the sickness have been more than our young naive minds could have anticipated on our wedding day.  This is not a man who should have a wife who would begrudge him love and companionship for his whole life because she is too selfish and insecure to truly want the best for him at all times, no matter what that means.  

So.  Someday, when I'm 90 and Michael and I are on our porch somewhere and I'm practicing my shuffle off to buffalo tap step in my fringey dance costume and my best wig and I lose my balance and fall off the porch and it's literally curtains for me, I hope I'll be prepared.  I have no doubt the rest of those old bags in my dance troupe will be circling Michael as soon as the crudite is put out at my lovely bereavement brunch.  They will have seen that he's a good looking guy for 93, doesn't talk much, is quite tolerant of too much talking, and will come to tap dance performances if there will be food and he can bring his puzzles.  They will know he has loving children, grandchildren, and great grandchildren and they will know it is because he is such a good man.  Those ladies will know they'd better capitalize on the fact that Nella is out of the picture, because even at 93, Michael will still be a man many women would give anything to share a life with.
I know I can't attack Michael's future wife in Heaven because that's not how Heaven works.  Heaven is a state of being in perfect union with God who is pure love.  If I can get in there, I will be able to love purely and freely in a way my puny human mind and heart can't understand right now.  If Michael ever remarries, I'm going to trust that God will have mercy on this poor sinner and see that I love Michael as much as is humanly possible and He will  help me to look down from heaven and smile and tap dance and rejoice that he is loving and being loved.  If I love Michael as much as I promised I would, it must be my most desperate hope everyday that his life is always the very best God has in store for him, no matter what or who that might mean.  If I truly love Michael I have to let go of this impulse to make our love about me, when it should always be about wanting the greatest good for him.

We are 12 years into this crazy life together and they have been 12 years that have included the greatest pain I have ever known, but also the greatest joy.  They have been 12 years of stretching our hearts to accommodate the love that continues to grow in our marriage.  Heart stretching can really hurt, but it always pays off.  Michael and I have decided (or I have proclaimed and he concurred) that we are going to celebrate our 75th wedding anniversary together someday.  I will be 96 and he will be 99.  So I guess I'll be 96 when I tap dance off the porch.  Poor Michael will probably be thinking "How did I get mixed up with a crazy broad who was stubborn enough to think she could still shift her weight from foot to foot that fast at age 96?" and then he'll probably shake his head and fix my wig  before the paramedics get there because he is the best.  Hopefully 63 more years will be enough time to love him as much as he deserves, to bless him just barely enough for how much he has blessed me in only 12.  Hopefully I'll stretch my heart enough in those years to make it to heaven devoid of the impulse to search for a celestial two by four, because Michael deserves every ounce of love the human soul is capable of this side of heaven, and so much more.

Happy Anniversary Michael, from your future geriatric tap dancer.  I love you so much and will work hard everyday for the rest of our lives to love you more.  


Thursday, August 8, 2013

Health Updates On Mommy And Avery

The cool kids historically make really poor choices so...not buying it.

I went back to Chemo yesterday.  BOOOO!!!  Yay.  No seriously yay.  The sooner I start back up again the sooner I'll be done.  Here are some updates on me:

1.  I had a PET Scan last week.  It was a pretty straight forward experience.  Being stuck in a tube was not as bad this time because I was smaller and more agile and felt capable of scooting out of there if things hit the fan.  Plus, the part in the tube was only 25 minutes.  In case you're unaware, when you have a PET Scan they need to inject you with a RADIOACTIVE SUGAR (or tracer) and you have to sit around and let it circulate through your body but not move too much so that you don't metabolize it before the test.  It is very odd to sit there and be casual while radioactive stuff that came in a giant looking syringe THAT IS ENCASED IN LEAD is circulating through your body.  There is no lead in my body so...that's math you shouldn't do when you're about to be injected.  Overall though, it was pretty easy.  At least I wasn't getting stabbed in the butt.  Any results?  Well, it turns out that I really do have cancer and this was not all just an elaborate misunderstanding hinging on the mass overreaction and systemic incompetence of multiple medical organizations that I was hoping for.  They feel it showed signs of progress, but really this needs to be looked at as a baseline because it is the best imaging I've had done since this started.  

2.  I went back to Chemo yesterday.  Did I mention that yet?  Ugh.  It was really hard.  I can't begin to tell you how hard it was to go back.  I was coming off of a 4 week break and during the last 2 weeks I've had the most energy I've had since this started.  I could think so clearly.  Chemo Brain is real and it is so annoying.  It was so nice to have the cobwebs cleared away for a while.  I don't want to go back to that and I already am and yuck.

(This is a warning to my brothers: this next section is about veins, skip this and go to the part about Avery)
3.  I need advice from Chemo Veterans and Medical Professionals about my veins.  I have terrible ornery veins.  There are the expected effects of the chemo on my veins which is that they get hard and yucky at each site I've received chemo, but my veins are apparently just really a puzzle.  The nurse always gets excited because they put heat packs on them and they jump right out and look good, but that means nothing.  The nurse will get the line in, get a great blood return, and then it doesn't work or it is really painful when the meds start pushing or the line blows.  Yesterday was my second chemo day where it took 4 tries to get a line placed.  It rarely takes less than 2 and I won't even count the day she "got it" in one try because after how well my veins tolerated the actual chemo yesterday I realize the day the line went in on the first try was way too painful and I had nerve pain in that arm for the next week and a half.  A Medi Port is not a great choice because I should only have 5 treatments left.  It doesn't seem like the best idea to get something surgically implanted that I will have to keep for a minimum of 6 months for only 10 more weeks of treatments.  A PICC line is out of the question because I just can't have that hanging from me with little kids around who could pull it out of place.  I know that the first thing I have to do is be more assertive with my care givers, but, if you know stuff about this something you're familiar with?  I know it has something to do with how I'm put together, I'm really full of extra valves or something.  Avery was a similar puzzle when they tried to get her PICC line in.  Any tips on how to communicate this situation more effectively with my caregivers?  I'd appreciate it!

Enough of that, here are some updates on Avery! (Let's face it, that's what you're here for and I don't blame you!)

That's her IV pump TURNED OFF!!  She is not receiving any IV medications, nutrition, or fluid anymore so her PICC Line is out and her IV pump is GONE and has been since Saturday!  She is getting all her feeds from her feeding tube and will be able to try a bottle this weekend!  She has stayed on her nasal canulla and is getting a medium flow of air but she is doing great with it.  She's also gained back the weight she lost initially after birth and has now exceeded her birth weight tipping the scales at a whopping 4lbs5.5oz as of today.

Avery Hope, 13 days old
She's so alert after our Kangaroo time and we are so happy for the progress she is making.  We still have a long road ahead but our precious girl is doing beautifully!  Thank you so much for your continued prayers and support!

Thursday, August 1, 2013

Lessons I'm Learning in the NICU

Geezaloo that last post was a downer.  Thanks for your kindness, love, and most of all your prayers.  You are the best.  This NICU thing is yet another crucible, I'll tell ya, and I'm learning so much.  Have you heard of Glennon at Momastery?  Well, if you haven't she is a recovering alcoholic and bulimic and she is a Mom and an author.  She captures so much about life so beautifully, and one of the best ideas about life she has expressed is the idea that life is "brutiful".  Brutal and beautiful, and oh my goodness that describes the NICU perfectly.  The NICU is absolutely brutiful.

Before Avery was in the NICU I would look at pictures of babies in the NICU kind of out of the corner of my eye, because it is a brutal sight.  That tiny person, so incredibly fragile, all those wires and tubes and contraptions that look so uncomfortable and even painful.  Now my daughter is one of those people in that brutal situation, and she is so beautiful.  They all are.  I can't say I don't notice the wires and tubes anymore, because I do, but they don't bother me because the job they do and the person they do it for are so beautiful.

Anyhoo, lessons I'm learning in the NICU:

1.  It's Enough To Be Strong Enough to Try

When Avery was born she was intubated because she needs the help of a ventilator to breathe.  We knew to expect this because babies born at 32 weeks aren't strong enough to breathe on their own.  There are different levels of ventilator assistance and I was anxious to get that tube out of her throat.  Talk about a brutiful sight.  When she was a day old they decided to take out the tube and have her try a nasal cannula instead.  I was over the moon!  This was it, this was our first step forward towards bringing her home!  It was progress and it was awesome!  I blabbed it on facebook and went to bed feeling like this would all be over soon.  In the morning I called to check in with Avery's nurses and found out she had been re-intubated.  Cue tailspin.  We were moving backwards!  She wasn't strong enough!  I really struggled that morning.  It was such a disappointment because I thought we were Moving Forward.  We've now been through the extubation/re-intubation cycle twice and this afternoon we may go through it again.  What I've learned though, is that when she's re-intubated that's ok.  Just the fact that they thought she was strong enough to try is a success.  Just the fact that the neonatologist thought it was possible to try is positive.  I see now that we will go through this forward and back many different times with many different procedures and that is ok.  Our baby girl is learning how to live on her own, and that is a complicated and difficult process.  Life is like that isn't it?  Learning to live is hard work, even out of the NICU, even at 33 years old.  Our little pixie can't even breathe on her own yet and she's already teaching her Mama an important lesson:   Sometimes being strong enough to try is the success, even if the result looks like a failure.

*Since I first wrote this Avery is finally on the non-invasive ventilator!  It took three tries and now she is doing well with it.  Yay!

2.  There Is Always Someone Who Has It Worse Than You

It's hard to see Avery all hooked up to monitors and the ventilator and the IV and the feeding tube.  It's hard to see her in her "spaceship", which is what we call her isolette.  It's so hard not to bring her home, but we will bring her home.  There are some families in the NICU who will not bring their babies home.  Avery just needs help to grow, to finish the work that should have been done in my belly, but she is not in immediate danger.  Some babies in the NICU are very sick or very very premature and their homecoming is not the sure thing that Avery's is.  This NICU thing is hard, but there are families who have it so much harder.  There are families all over the world who have a babies at 32 weeks and there is no NICU to keep them alive until they can do it themselves.  No matter how bad things are, someone out there--or just down the hall--has it worse.

3.  Good Things Come To Those Who Wait

AAAHHH!!!!  We got to hold her!!!!  Michael held her too but he didn't want his picture in the post.  We get to Kangaroo her for one hour a day right now.  There's really nothing else to say about that!  I'm off to have snuggle time with our little pixie!