Hello Eeyore - Part 2

I don't want to write this blog.  I want to keep what I am going through right now private.  Already when I walk in a room, I am the woman who just lost her baby.  I fear that by sharing this, I will be the woman who lost her baby and then had a mental breakdown to everyone I know.  I don't want to be that woman, but it is the truth.

It has been a long week of doctor appointments, adjusting meds and making time to rest.  Lots of psycho-analysis and reflection.  We have been working our way up the least invasive medical path available.  Last night we made the decision that I need full time intensive treatment.  Our local hospital has a partial hospitalization .  its a 9 to 5, monday through friday program.  i could be there one week or for months.  This is the path I am hoping that my doctors and our insurance allow us to pursue next.

Each day for about 3 weeks I've slide further and further into a hole of despair and self-loathing.  I am full of anger and guilt and hate.  The details of all of this I will keep to myself for now (although I am willing to share if someone in a similar hell privately emails me) but on a very basic level, I am stuck trying to make sense of Maddie's illness and death. I do not have the coping mechanisms needed to work through the emotions that come with this journey.  Although I have a wonderful support system, I am very self-aware, I am properly medicated, I am resting, I am in counseling and I acknowledge that most of what I am feeling is completely illogical, i continue to slide deeper into this hole.

There are three treatments that we are pursuing right now to help me to feel better:  I've already mentioned the medication and the psycho-analysis.  The last is to test my hormones and see if they are out of whack.  What you are seeing unfold in front on your screen is a severe form of post-partum depression due to infant demise.  Hormones are likely are huge culprit in these overwhelming feelings.

To be clear, I am not in danger of hurting myself. No one around me is in danger.  But if i do not get help and find a way to move on, my marriage and my ability to parent, not to mention to be a daughter and a friend, are in grave danger.

I love the outpouring of support these blogs bring with them and I appreciate you reminding me of what a wonderful support system i really do have.  But I do not write for sympathy.  And I definitely do not write to exploit what happened to my family for attention.  Both of these things have been suggested.  I do write because its therapeutic to me.  And i definitely write because of the confidently emails I receive that say, thank you for writing that, I feel the same way but didn't have the words.

I wish I could just stuck this up and drive on.  I wish I could flip a switch and be better.  That I could stop my whining and get on with life.  I wish that I knew a why out of this that didn't involve trusting the care of my family to someone else for several weeks.  But I plan to get through this, to work hard at it and to emerge as my best self.

Playing with God

In the past few months I have not been shy about the fact that I am disappointed in God.  So disappointed that I have often felt that He can not exist, does not love me, or is not a diety who is actually involved in our lives.  And I still cycle through these feelings on my bad days.  But I am having fewer bad days and continue to put a lot of effort into my "grief work".  I feel as if there is a healing happening, although I am not now, nor do I ever expect to be, healed from Maddie's death.

I have read many books, articles, interviews, and blogs these past months.  I have spent countless hours chatting, talking, writing and thinking about all of the hurt in this world and how it is possible that my God could allow any of it to happen.  This morning is my first real breakthrough after all of this hard work and I plan to share it as best as I can.

I finally came to the conclusion (with the help of CS Lewis) that i did not know my God at all and it was time to start over in our relationship.  Time to challenge some of the common and modern Christian notions (especially the ones that never sat well with me) and tear them down only to rebuild my relationship in stone.  If you have been a regular reader of my blog, you have heard all of this before.

I am not going to spend too much time putting everything into context.  If you feel like you need more context, I suggest you read a Grief Observed by CS Lewis and Tracks of a Fellow Struggler by John Claypool.  If you are not a Christian reading this, I hope my words will help remove some of the resentments you must have against us.  And if you are a believer, I do hope I don't offend but also challenge you to explore your own relationship with God on a deeper and new level.  I will try to remain true to biblical principles (although I admit my understanding is still weak) and not to blaspheme (although this may be a matter of perspective).

There are several modern and common Christian "truths" that I am going to call out now.  I believe they are false.  Not lies, but not complete truths - a term I learned a lot about at West Point - equivocation. I don't pretend to have any complete truths either, but do hope to stumble my way closer to the "truth". I will list them now and then address them one by one.

1. We are called to worship God without ceasing.
2. Without God, we are sentenced to eternal damnation.
3. Anything that separates us from God is sin.
4. We need Jesus for our salvation.
5. We are called to mold ourselves into His likeness so that we witness and spread the light.  This is what the commandments are all about.
6. The bible and prayer are the only ways to know God.
7. you have to go to church
8. Why is there evil?  Why did all of that stuff happen in the Old testament?
9. What did Maddie die?


Hang with me my friends.  One ancient and common truth is that we are God's children.  This I wholeheartedly agree with.  I also believe wholeheartedly that life is a gift from God.

Time to debunk some of the above half-truths:
1. We are called to worship God without ceasing.
I often give gifts to the children I love.  And nothing makes me happier then to see them play with my gifts as if it is the most wonderful thing they have ever encountered.  I recently gave Dillan a small leapfrog computer and he spends hours on it every day.  He tells everyone he meets about his new computer.  It makes my heart sing.

Life is our gift from God.  We are to treat it with gratitude. We are to maintain it, indulge it and love it.  Just as it is hard to watch a group of children laughing and playing tag without smiling, it should be impossible for us to fully live our lives without our heart singing out to God in thanks. 

The idea that God would create millions of people to sit around all day and remind him of His wonderful and great and powerful character is lame.  I image Luke's godson following me around all day worshiping and mimicking me.  I imagine it would take about 2 hours before he was on a plane back to the east coast with a note that said "never again".

But now imagine God in heaven watching all of his children loving this wonderful gift he's given us.  Laughing, sharing it with one another, working together to fix it when it breaks, finding new ways to love life.  That is a God i can relate to.  That is a God i can understand and love.

2. Without God, we are sentenced to eternal damnation. 
Being without God is like a child who never plays.  This child isn't damned.  But as a parent, I know that play is an essential part of my relationship with Dillan.  It is something I greatly mourn in Maddie's life.  There is not necessarily damnation without God, but you do miss out on this one very important and amazing part of life. Just as Dillan may not be in a mood in which we are able to play together, I would never forsake him for it.  I would just wait until he is ready again.  As many times as necessary and however long it takes.

3. Anything that separates us from God is sin.
Just as I don't have the luxury of playing happily with Dillan for hours on end, neither does God have the luxury of watching me fully live life 24/7.  Sometimes, I'm just not that into my gift.  Sometimes I abuse it.  Sometimes I purposefully break it or try to break someone else's gift.  Sometimes I take it for granted, forget about it in my closet or throw a fit when my gift isn't doing more then I want.  These things are sin my friends.  Sin is when we stop loving life, stop appreciating our gift from God or think others have better gifts then us.  These things may separate us from God as well. 

4. We need Jesus for our salvation.
I love my dad.  He is a great dad and a wonderful grandpa.  But he is also a single man in his mid-50s.  He does not regularly play with small children.  But when he comes to my house, he plays non-stop with Dillan and all of our little playmates.  He gets down on the floor, creates new games, laughs and has the patience of a saint.  Without Dillan, this kind of play with a stranger's child would not be possible without it being really weird and probably inappropriate.  Jesus is this bridge for each of us.  By making friends with God's only begotten son, we can play nonstop with His father without any barriers.   If we chose not to be friends with Jesus, we inhibit our ability to play with God and, again, fail to fully appreciate the gift of that is life.

5. We are called to mold ourselves into His likeness so that we witness and spread the light.  This is what the commandments are all about.
I can think of nothing I want more in this world then for Dillan to grow up and remind me of Luke.  I married a great man and would be proud to have Dillan emulate him.  The same is true of God.  We learn his character and seek his ways because he has set an example for us that will help us be kind, loving, well rounded people.  That will help us learn to love our gift and play with Him with gratitude.  The greatest commandant - to love God above all others and to love our neighbor as ourselves - is all about playing nicely.  Most of my favorite memories of friends and family involve playing for hours and being silly, laughing like loons.  Having enough in common and understanding how to best interact with one another allows for this kind of fun. 

6. The bible and prayer are the only ways to know God.
Imagine if I called you every morning and we talked about the exact same thing at the exact same time.  And we finished each call with me telling you everything that needed to change in the world and expecting you to spend the day fixing it.  then i said a quick "i love you bye" and hung up.  That would not be fun, would not be a friendship and would quickly turn into a toxic relationship filled with disappointment on both sides.  This is how most Christians spend their quiet time with God, at least as far as I know.

Every night, my son crawls into my arms and we read stories together.  He asks me a million questions and I do my best to answer them.  This is why we read the bible and pray.  To crawl into his lap and rest for a while.  to learn what it feels like to have his arms around us, smell his smell, learn his breathing and read his stories.  We learn more about him this way and him about us.  We can ask him a million question and he will do his best to answer them.  We can squirm and drift off and turn the pages too soon.  We can whisper silly things to Him or tell him about our day once the books are done and we are cuddling in the dark.  We can just feel his arms around us and feel safe.  In addition to play, this is how children bond with their parents.  He gives us His word and the power of prayer to be close to him, to be vulnerable with him.  But these are not the exclusive ways to spend time with him. 

7. You have to go to church
You don't.  But church (and it maybe a church you have yet to find) is a weekly family reunion.  It is where we can all come together and play with God and our siblings, including Jesus.  It is where we find experts to help us fix our gift of life when we break it.  It is where we become experts to help others (not just within the church family) that need help fixing their broken lives.

8. Why is there evil?  Why did all of that stuff happen in the Old testament?
I don't know. "There is a more honest faith in an act of questioning than in the act of silent submission, for implicit in the very asking is the faith that some light can be given" (Tracks of a Fellow Struggler by John Claypool).

So many things in our history are nonsensical, both small and large. The crusades, the holocaust, disease, murder, hang nails, and stubbed toes.  Without God, not only are we not able to play with him and fully enjoy this gift of life, but horrific things exist along side miraculous things for no purpose.  All is just random and luck and chance.  No silver lining, no cause, no light.

But with God, I can ask why. I can ask why all day every day and know that I honor Him by asking and that one day there will be an accounting for these things.

"I am really honoring God when I come clean and say, "You owe me an explanation." For, you see, I believe God will be able to give such an accounting when all of the facts are in, and until then, it is valid to ask" (Claypool again, I love this guy).

9. What did Maddie die?

I don't know.  But I do know that babies with Congenital Diaphragmatic Hernia were not meant for this life and that any of them survive past delivery is a miracle of modern medicine (a fact I firmly believe has God's handy work all over it).  So each minute of the 34 days with her was a miracle.  Each moment of our pregnancy with her is a miracle.  She is a gift from God.  Dillan is a gift from God.  And not necessarily gifts from Him to me and Luke.  That is part of the truth and I don't know the rest of it yet.  But their lives are Gifts directly from God to them.  Much different gifts, enjoyed by them in much different ways.  I will spend the rest of my life learning about their gifts as well as my own.

I take great comfort in the fact that every moment of Maddie's gift was full of unconditional love and devotion.  I can't say that is true of Dillan's life, even though he is so young.  But Maddie never knew a moment separated from the watchful eyes and loving care of her family and her medical team.  That fills my heart with such joy and gratitude.

I will close with this final idea.  For the most part, I am relearning  God primarily through analogies.  I have always thought, learned and understood most things through either direct experience or through analogies. You have to live life to understand analogies.  The more fully you live life, the more analogies you understand.  I believe God does this on purpose.

"What God was trying to teach...throughout his whole existence was the basic understanding that life is a gift - pure, simple, sheer gift - and that we here on earth are to relate to it accordingly." (you guessed it, Claypool again.)

Prayer Requests and Donations

Maddie has had a great couple of days - which is such a relief for all of us.  Luke and I both spent some time at home this week.  As hard as it is to be far away from Maddie, it is great to spend a few days with Dillan and Dakota and to know that Maddie is having a good day. 

Specific Prayer Requests for this week:

- Reduction in the amount of fluid her chest tubes are putting out.
- Successful weaning on the ventilator - maybe even extubation?
- Making progress toward starting to feed her.  A few milestones left toward this goal.
- No infections!  This is the biggest risk right now.
- Dillan to continue to adjust and adapt - we are asking so much of our little man and he is doing great!
- Housing for us all.  We are still at the hotel and as of July 19th, the UCSF Social Work Program has started to cover our bill (such a blessing).  But we are still hoping to get into the family house and have Dillan spend more time in the city with us.  Our cramped hotel room is just too, well cramped, with Dillan.

For those of you who have asked, our church, Monterey Church has established a benevolence fund for our family.  100% of what is donated will be given to us and is tax deductible for you.  We promise to use all donated funds toward care and bills for Maddie. 

Checks can be made payable to and mailed to:
Monterey Church
417 Alvarado St.
Monterey, CA 93940
(Include "Spence Family" in the memo line)

Surgery postponed indefinitely

To call today frustrating and emotional is a huge understatement. Last week, we met with one pediatric surgeon who wanted Maddie to be at her best before surgery. So the NICU team started to work hard to wean down her vent settings which sent her into a tail spin more then once. We finally found a place where Maddie was more or less stable and kinda kept her there. Every so often we would try to wean, but then return back to these baseline settings before she could get unstable. We assumed these base settings were her best and expected to get the green light for surgery on Friday.

Then the weekend came and the surgeon on duty over the weekend stated she didn’t want to operate on Maddie if she was at her worst. So we worked really hard all weekend to keep her stabilized and show that she can maintain constant stats. We assumed that some consistency in her stats and settings would show she was not at her worst and expected to get the green light for surgery today.

Then today, new surgeon came on. All day we were told to expect surgery after 4:30PM today and the whole team worked together to prep her (and us) for surgery and keep her stats and settings constant. We had some hiccups throughout the day, especially when 2 babies in her bay started to throw fits and it got really loud. About 3 PM, today’s surgeon came by and said that she doesnt like where the vent settings and NO are at all and that she wants to see her weaned down to a regular ventilator (remember right now Maddie is on a oscillating vent) before she’ll operate - even if that takes a week or more.

We had some emotions to deal with after this conversation. We have requested a family meeting with members from both teams so that we can all get on the same page and start working toward a shared goal. That should take place sometime tomorrow.

Our attending tonight was surprised that Maddie’s surgery was postponed and is working pretty aggressively to make the regular vent work. She’s sitting by Maddie’s bedside (along with the nurse and respiratory therapist), almost constantly adjusting settings to see if we can get Maddie to a nice stable place on the regular vent. I’m pretty in love with this woman right now and her determination to get my baby girl better.

We are frustrated. A lot of what is happening right now is because Maddie’s pre-birth ultrasounds showed such a positive prognosis (remember the 95% survivability we were given?) but she is presenting much worse and much sicker then anyone expected. Much more like a baby with a large hole in their diaphragm and with their liver up. So our whole team is having to switch gears and development a new course of treatment for her. There is speculation that her liver may actually be up and that she will likely need a patch and a chest tube - things we weren’t prepared for.

So I’ve been using this word “stable” quite a bit the last few days. In CDH land, the world we now live in, stable means not in immediate mortal danger. Maddie is in a medically induced coma and is only breathing thanks to the machines and medical professionals who surround her. But each procedure, each time they reposition her tiny body , even her first poop tonight, starts a spiral that would led to her body shutting down if not for immediate intervention. Its scary and overwhelming and heartbreaking. But its our world for right now. I mention this so that you understand that even on good days, even on great days, there are no sighs of relief for us - at least not yet.

I mentioned the other day that we started Maddie on a diuretic to start drawing out some of the fluid she is retaining. This is working great and has really helped bring Maddie’s stats back down to a manageable level. As you can see from the pictures below, the swelling in her face and especially her eyes, went down significantly today. Shes beautiful and so sweet to spend time with and so soft to touch.

Tomorrow Luke and I will take a bit of a break from Maddie’s bedside (don’t worry - her grandparents will be there for us) and spend the day playing with Dillan. There is even the possibility of him spending the night with us in a hotel if it looks like Maddie is going to have a quiet night. I’m so very excited to see him - i may jump out of my skin.

Our prayer requests tonight are numerous and a lot of them are very unspecific. But here are two among the rest

Maddie adjust quickly and safely to the new ventilator so we can move ahead with her treatment plan.
Housing for Luke and I. We lose our boarding room in the hospital tomorrow at noon and dont yet know what the plan will be after that. Likely we will stay in a hotel for up to a week while we wait for room at the family house.

This is a long blog. thank you for loving us enough to read all of it.

This evening - No more swelling

early in the morning - very swollen

Great Expectations

So my dad has always had a couple of sage pieces of advice that I've really found to be true in my life.  You may have heard others say Expect the Best, Prepare for the Worse.  In our family, we've always said, keep your expectations low and you won't be disappointed.  Since learning that Maddie has CDH, I've really stuck to this in terms of her medical prognosis.  But after our appointment at UCSF today, I've moved up a bit from low expectations to cautiously optimistic.

Totally normal boring ultrasound (new beautiful face pictures later tonight or tomorrow).  Maddie is doing everything she should and nothing new or alarming showed up during the exam.  We meet with Dr. Rand and decided that the next time I need to travel to UCSF is our scheduled delivery date of July 5th or if I go into pre-term labor.  Very cool.

We also met with Dr. Lee, the Director of the Fetal Therapy Center and a pediatric surgeon.  Dr. Lee gives Maddie a 95% chance of survival and explains the other 5% risk associated with things we just don't know yet.  He imagines Maddie will have a relatively short stay (about 4 weeks) after having surgery sometime in the first week of life - assuming no other complications. Once again, I left UCSF feeling like we are the best case scenario for a worse case situation. 

The highlight of the day definitely came during the ultrasound.  Jamie and Dillan came in for the first few minutes and Dillan was transfixed by the screen.  For whatever reason, I assumed Dillan would be able to distinguish the blurry ultrasound images and actually understand that he was seeing Baby Sister on the screen.  About 3 or 4 minutes into the exam, he very loudly and proudly announced "Thats not Baby Sister - Thats a FISH!"  we all died laughing and he repeated the joke about 500 more times. 

Prayer Requests going forward:
- No pre-term labor.  Nada.  None.  Zero.  Not even a little bit.  Don't want it - don't need it.  No thank you.
- No post-labor complications for me.  If ever there was a lady in need of an easy c-section recovery, its this girl.
- No post-delivery complications for Maddie.  We want one repair surgery and then to forget about this whole CDH thing ever happened.  Its possible, even if its not probable.
- Divine Intervention and timing to help work out all of the day to day family logistics starting about July 1 and going forward for a few months.  Housing, food, child care, laundry, doggie care, parking....still a lot of things i'm not exactly sure how we will handle but it helps knowing that we aren't going to be alone through all of this and that we literally have hundreds of people we could call and ask for support (including you so don't reject our calls!)

The Miracle

I know many of you are praying for a miracle to heal Maddie before she even leaves the womb.  Confound the doctors and surprise us all.  And I thank you for your prayers and your faith and your love of my little girl.  It would truly be a miracle if anything to help reduce the burden of CDH happened. 

But I have to be honest, I am not praying for this particular miracle.  Not because I don't have faith.  And not because I don't have hope.  And not because I don't want to protect my sweet baby from everything I know she has to go through.  But mostly because, in my heart, I feel God has a different plan for her.  He will give her an amazing testimony of love and faithfulness and power and redemption.  He will grow our family through this struggle and reach the unreachable with His love and grace. 

Today, Clara's mom (http://thehardylife.blogspot.com) shared an amazing sentiment "What a difference a Week Makes" on how God is giving three week old Clara a story that surprises, confounds and reaffirms that we are all loved by someone and something greater then any of us can image.  I know Maddie will have her own special story but I take so much comfort and encouragement in reading Clara's. 

So please continue to pray for miracles, but do not neglect to pray for His will be done and our hearts to align with His. 

Pray for Baby Clara

Two week old Clara is struggling to survive and overcome CDH complications. Please pray without ceasing for this beautiful little girl and her family.

http://thehardylife.blogspot.com/

Prayer for our appointment

Our appointment is set for Monday.  The baby and I will be going through all sorts of tests and holding consults with specialists throughout the day.  So the really great news is that we will have a clear picture of what is going on, what to expect and what comes next by Monday evening.

Specific Prayer Requests:
- For an amazing team of medical professionals to take care, guide and advise us.
- For this to turn out to be nothing - just a big ultrasound fake out.  God healed Dillan without any medical intervention, we have complete faith He can do it again.
- If it is CDH, for and LHR of 1.4 or greater, lung down and a left-rear hole.
- That no other abnormalities, defects or complications arise. 

Less Specific Prayer Requests:
- For peace and understanding as we go through this.  I can't figure out why two healthy, active young adults like Luke and I have had such a hard time with our pregnancies and having sick babies.  It confuses and aggravates me.  

I'll post again Monday night or Tuesday morning with the results.  Until then, please keep your prayers coming.