Saturday, August 6, 2016

Bringing Bunny Home ... a novel :)

As I type this blog post – actually voice text it into my phone – I am holding a very content baby in my arms.... and I'm sitting in my husband's office at our beloved Rice Ranch. 

And if you knew how good it feels to be home… if you could crawl inside my heart right now and feel what I feel… well, there's nothing like it. 

Our bunny is home.

After 16 days of tubes and wires and non-stop beeping from machines and nurses and doctors coming in to check vitals etc. at least every 20 minutes and sleeping on a foam mattress in a window seat and riding the roller coaster that is the PICU .... it feels like heaven to be home again. I can't even put into words how wonderful it is to be holding Madison without any wires or IVs or tubes. I can't even describe how beautiful silence sounds right now.

I blogged from the hospital about some of the things that we went through with Madison, but it would take a book to document everything we experienced. 

And I might write that book someday. 

And if I do it will be called The Power of Corporate Prayer. Or maybe something catchier. But it will be along the lines of that theme.

I've been a Christian for over 30 years now, and I can honestly say I have never experienced firsthand the power of corporate prayer like I just did for two weeks in a hospital in Portland. 

I have never experienced such an intense level of fear, I have never cried so much, I have never cried out to God so desperately, I have never been so concerned for my baby's life, I have never functioned on so little sleep, I have never been on such a roller coaster of emotions… And at the same time I have never experienced so tangibly and so overwhelmingly the grace of God. Sam and I truly feel like we just walked through the valley of the shadow of death - and it was the prayers of so many that brought us through.

It's so hard for me to write about it even now because the feelings are so fresh .. if I close my eyes I'm back in that tiny room in the PICU holding my baby's hand and praying for a miracle - and at the same time wondering if I am going to leave that hospital without her.

As I blogged before, Madison's heart surgery was a success. Her PDA was closed by ligation, and her surgeon was extremely pleased with the results. 

In the days that followed however, she developed a complication called chylothorax ... I described this a few posts back, but in a nutshell she was leaking lymphatic fluids through her chest tube at the rate of 800- 1000 mL a day.

To put that in perspective, Madison weighs 10 pounds. She takes roughly 800 mL of breast milk a day. So she was losing more fluid than she was taking in. Her surgeons and medical team were extremely concerned because she was losing SO much fluid, and they had to replace everything she was losing on an hourly basis. And she wasn't just losing "fluid". She was losing her electrolytes, blood platelets, potassium, etc. -and everything that she lost had to be replaced through a central line in her jugular vein. 

After determining that a diet of skimmed breast milk (eliminating fats can sometimes reverse the chylothorax) was not working, her doctors decided to make her NPO ... this means she was not able to have any oral feeds for seven days, and all of her nutrition went into her central IJ line. However, even though she was receiving nutrition, she always felt hungry. For seven days. the nutrition she was receiving bypassed her stomach. It's hard to put into words how difficult it was to try to keep our baby happy for seven days with nothing in her belly.

Obviously our doctors did not want to keep Madison sedated for a full week. She did receive morphine when needed, Toradol (which is an infant form of IV ibuprofen), Tylenol, and at times oxycodone to help her cope. But there was no getting away from her pathetic cries for food. On top of this, her little veins were so damaged because of all the IVs and pokes and attempts at drawing blood, that she was bruised and tender and irritable from head to toe.

At one point, after several days of losing so much fluid, our Bunny began to show signs of dehydration again. She was extremely pale, and looked almost lifeless. I am not posting those pictures here on purpose - if you think the ones I've chosen to share look terrible, keep in mind the ones I deleted were worse. 

One of the most difficult times during our stay was eleven at night in the PICU when one of her doctors came in to discuss with us the need for Madison to receive a blood transfusion. (Did I forget to mention that after being transferred to a normal room for a few days, we ended up back in the PICU?) I know this may be something doctors in the PICU are used to administering, but it's not something we have ever had to make a decision about as parents, for any of our children. 

This decision, coupled with the fact that we were running on only a few hours of very interrupted sleep each night, was not an easy one to make - I have a whole new level of respect for families that have to routinely make such crucial medical decisions for their children. We decided to hold off for six hours until new labs could be drawn in the morning - unfortunately Madison's hemoglobin was so low that it would have taken a week for it to return to normal levels without a transfusion. And that was IF she did not have all the added factors (chylothorax, etc.). 

Within a few hours of receiving her transfusion though, some of the color returned to our beautiful girl, and she was able to grasp our fingers and focus on our faces for a few minutes at a time. Prior to this she was constantly rolling her head back and forth on her blankets, and the only time she rested well was when her pain medicine was at its peak. 

The plan had been to keep her off oral feeds for as long as possible to see if the duct would heal itself. After several days, however, it became evident that was not happening, and her doctors made a tentative plan to schedule surgery to repair the thoracic duct ... in addition to this they decided to administer octreotide. This is an IV medicine that can often help dry the body out, and it has proven successful in many cases involving chylothorax. 

However (I'm using a lot of howevers in this post, have you noticed ???), this medicine can also cause babies' heart rates to drop. Unfortunately this was the case with Madison – at one point in the night her heart rate dropped to the low 60s, an alarmingly slow rate. An EKG was done to make sure her heart was not damaged, and the decision was made to only keep the octreotide going at a very low dose.

The next morning Madison's fluid output had so dramatically decreased that her medical team decided to hold off on surgery. Sam sent out a text to our church explaining that we were cautiously optimistic that a miracle was taking place. I say cautiously, because even the doctors did not know if the octreotide had begun to work before having to be decreased, or if the duct was beginning to heal itself. From early in the morning to almost noon, her fluid output was in the single digits. 

(View from the observation deck at the hospital ... Sam and I went here to breathe and pray while Madison was having her central IJ put in.)

I fell asleep in our window seat/bed, hopeful that our baby was on the mend. The surgeons had warned us that surgery was not a guarantee that the duct could be repaired- which is why they were trying every other method that could be used before taking her back to the OR. 

I woke up and saw the nurse - once again - draining the bulb that was attached to Madison's chest tube. During my nap, the fluids began to increase... I can't tell you how our hearts sank as the descent on the roller coaster began again. 

Two different times during our 16 day stay, I found myself at rock bottom. One of those times was when a veteran PICU nurse shared with me that in nineteen years of nursing she had never seen a baby with chylothorax put out so much fluid. The look on her face, the tone of her voice, and the fear that gripped my heart when she said those words ... I wish I could say my faith rose to the challenge, but in reality ? It was at an all time low. 

The second time was shortly after Madison's fluid increase escalated again. Sam went down to another floor in the hospital to get a coffee, and I was holding Madison's hand, trying to distract her from her hunger by singing to her. Her nurse looked down at Bunny's foot and realized she had kicked her bandage off the foot with an IV in it ...and then noticed the IV was coming out. She called another nurse in to help her and at this point Madison was screaming. I held both of her hands to keep her from moving while the nurses attempted to carefully take the IV out...Madison was crying so hard she was sweating, and it was difficult to hold her still. All of the sudden I looked down and saw that her chest tube had fallen out - I told the nurse, who promptly yelled OH MY GOD HER CHEST TUBE IS OUT.

At this point, so many medical personnel began filling our room, that I thought our baby was about to die. The nurse quickly put a piece of gauze on the hole and applied pressure - the cardiologist and assistant surgeon called for an immediate X-ray to make sure no air had entered her chest when the tube fell out. That five minutes felt like an eternity, and the assistant surgeon was so upset/nervous that he tried to enlarge the X-ray image on the machine with two fingers, like you would an image on an iPhone :) Someone reminded him that it didn't work that way (I can laugh now!) and found a way to zoom in on Madison's tiny chest cavity. Thank GOD there was no air (don't ask me how you see air on an X-ray ??) and thank that nurse for acting quickly and saving Madison's life! The doctors consulted with each other and decided that it would be better to leave the chest tube out at that point, and keep the hole closed with vaseline, tape, and gauze. She would have another chest X-ray the next morning to see if the fluid was now accumulating inside of her chest, now that there was no place for it to drain, and she would be closely monitored throughout the night for signs of fluid on her lungs.

Doesn't that sound comforting ? We will monitor your baby to make sure that all the fluid that was coming out of her is not now inside of her, causing a rapid onset of pneumonia. 

But her cardiologist assured me they were ready to rush her to surgery if at any point the fluid began to cause Madison distress.

So that was my second breakdown ... 

I told Sam I had to go find a place alone to pray, while he took a turn comforting Madison - I left our room and stumbled down the hall to the exit doors. 

And at that precise moment, I witnessed something I'm sure the PICU staff had seen too many times - but for me it was like a nail in a coffin.... 

A frantic mommy, hysterical and shaking from head to toe, ran out of her child's room, and almost collided with me as I opened the door to leave the PICU. She looked at me with tears streaming down her face and then started to stagger down the hallway. I ran up beside her and put my hands on her shoulders - I asked her if she needed me to pray for her, and she turned and fell on me, sobbing in obvious distress. 

Readers, I held this stranger in my arms, and she held on to me like she was drowning. I stood there in the hallway, my heart pounding, while this shaking, broken mama sobbed on my shoulders. If I had let go of her in that moment, she would have collapsed on the floor - I was literally holding her up while she gasped for breath. 

Can I tell you I have never felt fear like that in all my life?

I was leaving the PICU to get away from it all for a few minutes - the noises, the smells, the taste of fear in my mouth like metal - and here was death staring me in the eyes. 

I asked this mama her name, and she sobbed out "Vanessa" - her husband at that moment staggered passed us, leaned against the wall and slumped to the ground. His wife turned and knelt beside him ... I asked them how old their child was (is ? I didn't know what to ask) and the wife mumbled "two" ... I asked the child's name, but they both just started crying so hard that I couldn't ask any more questions. I told them I would be praying for them - I felt completely useless leaving them alone in the hallway, but I didn't know what else to do.

(I later learned that this couple had lost their child just before I saw them... and also heard that the past two weeks had been brutal in the PICU. The nurses and doctors had seen so many deaths during our stay, and one of the children had died during surgery the night before Madison had been scheduled to have hers.)

I started walking towards the elevator in search of the chapel, when I saw one of the residents who had been treating Madison. Her name was Nancy, and she had seen Madison upstairs, the first time she had left the PICU. She took one look at me - crying and shell shocked - and asked me if I needed help. I told her I needed a quiet place to pray, and she said she would walk me to a meditation room not far from where we were. As we walked I told her all my fears - that our baby was going to die, and that I knew nobody could guarantee me that she wouldn't. 

This sweet young resident - probably young enough to be my daughter - walked with her arm around me and told me that our baby was in the best place she could possibly be. She reassured me that our team of doctors was keeping a close eye on Madison, and that she was receiving the best possible care she could. She walked me to the meditation room (she wasn't sure where the chapel was and it really didn't matter to me anyway) and gave me a hug before she left.

Friends, I walked into that room, found a chair, and sank to my knees. I wish I could say that the prayers that followed were ones of faith and confidence, but the opposite is true. I was just like that mother I had left sobbing in the hallway behind me ... I was broken and filled with fear and crying out to God for things to be different. Every terrible thought in the universe seemed to be filling my mind, and at that point I didn't feel like my prayers could move a molehill, let alone a mountain. I remember telling God "if all this takes is a mustard seed of faith, then I'm in big trouble - because right now I don't even have half a mustard seed." I cried and prayed and cried some more. I prayed for Vanessa and her husband, for the doctors and nurses and all the staff in the PICU, I prayed for stength for Sam and for me and for our children back at home, and I prayed for our Bunny.

(Tyler, visiting his baby sister in the PICU)

Our son Josiah called while I was praying to see how we were doing. I told him where I was and how fear was so dominating my brain, that I felt helpless as a praying mommy. I told him how guilty I felt for not even having a mustard seed of faith right then for our baby. And he said something that I will never forget. 

He told me: you don't have to have enough faith right now for Madison to be okay, Mom. You just need to surrender. That's all God asks of you. You need to trust her into God's hands right now. 

Can I tell you that those were the exact words I needed to hear right then? 

Because sometimes really bad things do happen in this life. Sometimes babies do die - despite the desperate prayers of their parents. Sometimes doctors do everything they can, and modern medicine can only go so far. Sometimes life just hurts, in worse ways than we ever thought possible. 

But it wasn't my job to handle it all..  because it wasn't even in my ability at that moment to muster up a mustard seed of faith. I could not get there no matter how hard I tried.

But I could surrender. 

I could mentally, emotionally, and spiritually place Madison in the Father's arms and surrender her to Him. I could trust that no matter what, He loves my baby more than I do. And if that meant He was going to take her home to Heaven, then I would trust in His grace to help me through. I needed to stop the "what ifs" and "how could I possibly live if that happens" and just trust the One who created our baby girl.

I got off the phone with Josiah and opened my Bible app ... and I am really not into "Bible roulette" where you open your Bible and read whatever scripture pops out, and that's what God is telling you at that moment. But this was the verse for the day, and it completely ministered to me right where I was ...

...because GOD was the one who knit my baby together. That tissue paper thin web of thoracic ducts from where all that fluid was pouring out of my Bunny at record breaking volumes ... He designed it all. And I could trust that nothing was escaping His notice. Even when I felt that my daughter's life was at the mercy of the doctors and nurses, even when I knew that human error could mean life or death for my baby - I could SURRENDER to the One who held her in His hands. I didn't have to live in fear every moment, I could choose to trust in Him - no matter what the outcome.

I left that room with renewed faith... and maybe it had only grown from half a mustard seed to a whole one ... maybe it was still so tiny that not even the weakest Christian on the planet could be impressed ... but I felt something in me start to break. I felt that weight of fear and doubt and unbelief start to lift off my brain, and I knew we were going to be okay.

The next day, amazingly, Bunny's chest X-ray showed very little accumulation of fluid. The results looked so good in fact, that her team of doctors and staff (I counted fourteen of them each morning during their rounds) decided to hold off on surgery for another day to see if things improved on their own. 

We had already made plans for Mackenzie to bring the children up to Portland to spend the day with us... Josiah came as well to stay with Madison at the hospital while we visited OMSI, a science museum we have a membership to.

And here is where I have to say the highlight of our two week stay occurred. We had been trying - to no avail - to get our Bunny to smile ever since the day she went into heart surgery. Sam and I tried every trick we could - songs, games, toys that lit up, making crazy noises with our lips (usually her favorite) ...we would have brought in dancing elephants if we thought it would work. But nothing would bring a smile to our baby's face.

Until this moment ...

Kenzie stood at the head of Bunny's crib and told us all to smile for the camera- and look what happened :):):) Madison looked up at all of her siblings (minus those who had to work) standing around her crib and grinned the BIGGEST GRIN EVER just as Mackenzie snapped this photo.

Sam and I have been talking for days about how awesome and amazing it is that a six month old baby feels genuine love and happiness at the sight of her brothers and sisters. She kept smiling the rest of their visit too- and even when we returned to the hospital after a day at OMSI, her smiles kept coming.

Lily was in heaven eating her favorite food (besides Cheerios) at OMSI

Noah and Jackson

Daddy and Kenzie went in on a "space ranger" helmet for Hayden at OMSI because he reallllllly wanted it :)

The next morning, a new chest X-ray showed that the fluid had begun to accumulate in Madison's chest. Her cardiologist and surgeons determined that she was ready for surgery, and they kept an extremely close eye on her up until the afternoon, when surgery began.

Several hours later, our Bunny emerged - she remained intubated for almost 24 hours, and she was extremely agitated - but her thoracic duct was repaired.

A dozen microscopic sutures later (I know because I asked!) and she was as good as new.

Here is the team of medical personnel on the morning rounds, the day after her successful surgery ...

Dr. Chen Irving, the chief surgeon who performed the surgery and saved our baby's life. 

I took a picture of his shoes - I pointed out that there were more holes than shoes, and he shrugged and said "it's Portland" :):) :)

Dr. Ashook - the surgeon who performed Madison's heart repair and assisted in the thoracic ligation. One of the most intelligent people I have ever met - and one of the kindest as well.

Later that weekend, Madison was all smiles ....

...especially when the doctors gave her the all clear to drink Mom's milk again !!!

On Monday we were able to leave the PICU and be transferred to a regular room. ...

.... where Miss Madison started to return to her typically happy self ...

Wednesday morning we received the glorious news that we were being discharged ... we packed our bags and cleared out of there before anyone could change their minds !!!

We drove home to the Rice Ranch crying happy tears and rejoicing in all that God had brought us through. It was not something I hope to ever go through again, but I am so GRATEFUL for the saints of God who prayed us through every minute of our stay. I know that in our darkest moments, the thing that held us up was the prayers of so many across the world, and the grace of God.

I asked everyone on Instagram who was praying for Bunny to leave a comment saying where they were from... over 500 cities and states and countries are listed on this poster I made while we were in the hospital. xoxox

So here I am, wrapping this blogpost up, and I just realized I actually did wrote a novel.

If you've hung in here through the end of this post, you deserve a gold medal. Or a giant hug. Either way - thank you.. Thank you for loving our Bunny and loving us, and for praying us through one of the most difficult seasons of our lives. We are forever grateful.

Now if you'll excuse me, I have some Bunny snuggles to attend to ...