I bet not just anyone is allowed to ride a Big Wheel in the house. But you can if your name is 'Cayman' and you totally have Grandma and Grandpa wrapped around your little finger.
Remember me saying that not only has Cayman bounced back, she's also making amazing strides?I didn't have time to get my traditional morning posting accomplished.
I'll try to have it up this afternoon.
I just wanted to let you know that so you can silence any thoughts that might be thinking 'no new posting means bad news'.
It doesn't.
So watch for it later today.
I simply stand in awe over the next miracle I will share with you.
Trust me, you won't want to miss it!
Our first morning at home, after a week in the hospital, it was delightful, even more than usual to wake up and lift Cayman out of her crib.
To change a diaper.
Fix a morning bottle.
And snuggle on the couch with her.
My heart was full of praise, as I am sure you can imagine!
And Cayman, well she did something new...
She pointed at the DVD player. And when I asked, "What do you want?", she looked me right in the eye and put her little arms straight up in the air much like in the same fashion as she does for "touchdown". But it was not touchdown that she was conveying.
She was asking for her Praise Baby, an interactive DVD filled with a blend of children, animals, and animated graphics played over a soothing melody mix of Praise and Worship songs.
I was surprised she remembered it. It had been weeks since we watched it last. And I was doubly surprised that she knew the DVD player in connection with the Praise Baby.
It was one of those moments where my heart was so proud I thought it might nearly burst.
I popped the DVD into the player and we poured our praises out.
Praise the Lord. How good it is to sing praises to our God, how pleasant and fitting to praise Him! -Psalm 147:1
Signing "night-night"
I sat up straight in my seat as the helicopter descended toward the helipad. I braced myself for the landing, anticipating a slight jostling as it touched the ground. I was surprised though. The landing was not like that at all. It was smooth and gentle.
Waiting for the rotors to motor down I consciously made an effort to stop my foot from tapping as my impatience surged through me. I stared out the window in attempt to not concentrate on time. A clock always seems to tick slower if you're watching it.
The helipad was at the top of a hill. At the bottom there was a street. I watched a car below, stopped at the red light and the children in the backseat were pointing in awe toward the helicopter as they had just watched its magnificent landing. The mom in the passenger seat was smiling and pointing in wonderment too.
It felt strange peering from my window into theirs.
Like two different worlds existing at the same time.
If there was a Looking Glass to pass through I would have taken my little Cayman and entered their world. I wanted to feel the wonderment too and leave behind the scary uncertainties that we were facing.
I unbuckled myself and leaned forward in my seat.
The eagerness...
The impatience...
I'm not sure what to call it...
Whatever it was, I couldn't hold it back.
I was ready to jump out and get Cayman inside those beautiful familiar doors of the U of M hospital. In a strange way it holds a special place in my heart as if it's home.
A major part of our family's life happened there.
Began there.
That place will always have a distinguished spot in my heart. And then there is the fact that there is no other person that I trust more with my daughter's life than the Neurosurgeon that works there.
My heart began to beat a little bit more smoothly since we landed.
Inside the E.R. I was overwhelmed by the number of people waiting for us. The look on their faces showed relief when they saw us.
A woman made herself present by my side and she rarely left me. She introduced herself as a social worker. I was grateful to have her there with me. I felt so alone and missed Mike terribly. This lady, she was a complete stranger to me and yet the lonely burden I felt was alleviated in her presence. Her empathy and affirming words made me feel understood and accepted and I had barely breathed more than one sentence to her.
Even now in my memory as I think about her, standing next to me, dressed in white, I feel like Cayman and I had a little angel with us - guarding, helping, encouraging, protecting - seeing us through that difficult segment.
I stood back watching the busy scene around Cayman's bed. There must have been nearly a dozen people surrounding her. I could see Cayman's sharp movements as she fought against them.
It was a hard moment for me wrestling with the urge to run up and rescue her all the while knowing I needed to stay out of the way so the medical staff could do their jobs in order to save my little Cayman's life.
An unfamiliar man soon approached me and introduced himself as the chief resident of Neurosurgery. He was kind but honest as he informed me how critical Cayman's condition was. Her heart rate was so weak he was not confident that she would survive surgery. "I want to get a set of CT scans done and talk with her attending Neurosurgeon before we make any decisions about what we'll do for her shunt. If we don't think she'll survive the O.R. we'll extract her shunt right here in the E.R. with local anaesthetic at the neck and see if we can get it working. Then in a few days when she's recovered we will take her back to surgery to re-internalize her shunt."
The doctor explained to me how he had inserted a needle through her shunt and pulled off an ounce of fluid from her brain before Cayman's heart rate began to stabilize into the 90's. It had been dipping into the 50's and they were unsuccessful at getting a blood pressure reading.
Through the parting in the crowd around Cayman I could see her resting comfortably. Her beautiful pink face was asleep. I found myself constantly basking in the appearance of her pinkness trying to drown out the horrid memories of when she was blue.
When Cayman had been fully assessed and every vital being continuously monitored a doctor approached me. He worked in the PICU and would be taking care of Cayman while she was there.
"You can go up to her bedside now. I need to tell you though I had to give her something that paralyzed her. She was fighting us so badly we couldn't do our jobs and right now she's in such a critical state we need to work quickly. I also gave her a small dose of a sedative and something for pain so that way she's not just laying there miserable and can't tell us. But she's awake and she can hear you even though it looks like she's sleeping."
Her temporary paralysis felt eerie to me as I approached Cayman's bed. She looked just like she does when she's sound asleep but it was so different knowing she was awake but couldn't voluntarily respond to me.
I continued to mutter out my words sounding so much stronger and calmer than what I felt on the inside. Talking. Singing. Telling Cayman how Daddy is on his way and will be there soon.
Then some more medical people came and took her for a CT scan. I was not allowed to go in. I stood outside the doors feeling shaky. It felt like Cayman was worse off when my Mama eyes were not looking over her. I knew that was not a rational perspective. But when it comes to matters of the heart, a mother's love, rarely is it logical.
My little social worker angel reappeared at my side. She had badges for both Mike and I printed up all ready to go so we would not be bothered by stopping at the security desk. Again her presence helped me get through the minutes of waiting.
When the doors opened to the Cat scan room I saw Dr. Maher, Cayman's Neurosurgeon. Oh it was a blessed relief to see him there. I trust his guiding opinions and rest so easily in his medical decisions. He was the first one to exit the room as he headed in my direction. He walked with a strong step in his gate, full of serious business agenda written across his face. He started to speech at the same time I bellowed out a sigh, "Oh Dr. Maher, I am so happy to see you."
The doctor paused, laying aside all business for a moment. He compassionately looked at me and replied, "You've really been through a lot today haven't you?"
It was all I could do but give a weak little smile and sigh as my eyes filled up with tears.
Cayman was wheeled out from the room and into the hallway. The doctor and I followed in step behind them. As we nearly cantered down the hospital's corridor, he spoke with an earnestness in his voice as he explained to me how sick my little Cayman was, "From looking at the CT scans there is no doubt this is a shunt malfunction. Her ventricles are much larger than they were at her last scans in October."
We turned the corner and stood before a pair of Patient Elevators.
Dr. Maher looked at me and said, "These elevators go to the O.R. and it's confusing how to get back to the waiting room, where Big Bird is." He turned around and started to walk in the opposite direction motioning for me to follow him. "I'll take you this way and make sure you get to where you need to be."
I quickly changed directions and started to follow the doctor. When I turned the corner I suddenly felt the impact of the space that now separated me from my little Cayman. I stopped abruptly. Looking worried I asked, "Can I kiss her really quick?"
Dr. Maher, so compassionately and apologetically replied, "Oh yes, please. Of course. I'm so sorry."
I ran in the direction toward Cayman and caught them just before they loaded her into the elevator. It was a short good-bye, not really satisfying at all but it was better than nothing.
"Please come back to me my little Cayman." my thoughts bleated in my head. I held that one last little kiss close to my heart begging God to give me a chance for more.
Knowing we did not have much time and not wanting to keep the doctor waiting, I was careful to not stagger away from the elevators slowly. I followed in quick step next to Dr. Maher as he continued to speak kindly but honestly, "I know we always talked about the next time Cayman went back for a shunt surgery we would plan on checking out the possibility of putting it into her abdomen but today is not going to be that day. I think that is too risky to try because right now she is so sick and if we place it in her belly and it fails in a few days before her brain has a chance to recover we'll be doing her a disfavor. Today is not going to be about taking risks. It's going to be about doing whatever we have to do in order to save her life."
I nodded showing I completely understood everything the doctor was telling me. I looked up just then and saw Mike. I was so frazzled by all that was going on that it took two, maybe even three glances at him before I reacted on the familiarity to the face of the the man I love.
"Oh Mike's here! I'm so glad you're here! You made it!" I felt my words just roll out from me at the speed of a race car. Mike looked so different with wide eyes full of worry. That two hour drive he had just made must have wore on him terribly.
Mike and I sat close to each other in the waiting room near the giant Big Bird that brings a sort of glamorous cheerfulness to that lobby. We tried to distract our minds yet we kept coming back to the details of what had just taken place that morning for us.
I felt much like 10 second Tom in the movie "50 First Dates".
Tom has a memory that only lasts for 10 seconds at a time and then he forgets. He's hit with the same things continuously over and over again as if he's taking it all in and learning about it for the first time.
That's how I felt as I sat there processing and recalling the moment I looked at Cayman, blue and pale. Not breathing. No heart beat. Performing CPR. Calling for a crash cart.
Mike, stunned and serious, turned to me and asked, "Is that the definition of dead? Was Cayman dead?"
And in about 10 seconds we were asking the same question all over again.
It still felt like it just all couldn't be real. Like we were caught in a bad dream or something.
Cayman opened her eyes.
The heavy air in the room decompressed at that moment as we all took a deep breath in, gasping at the amazing joyful signs of life within her. It brought tears to our eyes. Cayman was nearly on the brink of death just moments ago and now life was present again. It made its appearance in a fiery fit of rage as Cayman got mad. Her arms and legs went flying into the air and her hand took a firm grip on that breathing tube. The nurse rapidly let go of the ventilating bag and grabbed Cayman's arm stopping her from yanking the tube out from her mouth.
I wanted to laugh and cry at the same time. What a tremendous relief to see her responding so appropriately to an invasive situation. Yet my heart broke as I saw her desperately fight in fear over all the unfamiliar things surrounding her. It took me back to my own chilling memory when I was twelve years old awakening on a breathing machine from a comatose state.
I remember the panic. The fright. The incomprehensibility.
As Cayman gave up against the clutches of the medical staff, tears burst out from her eyes wetting her beautiful long lashes. All the sounds of her crying were stopped by the breathing tube passing through her throat but all the expressions of her anguish was present on her face and in her eyes.
My heart broke into a million pieces.
I stared into her precious little face, trying to smile and tell her "It's ok sweetheart." in the strongest tone that I could possibly mutter. She looked at me and brought her hands up toward me asking to be held.
My heart broke into a million pieces all over again.
Oh my little girl.
All the tubes, wires, new people - she couldn't understand. And there was no way I could explain it to her so that she would. She just wanted held. That's familiar. That's comforting.
"Rescue me please Mommy." I felt her little gesture call out to me.
I felt my body shake as I held in the urge to cry uncontrollably.
"I can't hold you sweetheart. I know you don't understand that. What if Mommy holds your legs?" I placed my arm under the bent of her knees and pulled myself toward her body trying to desperately make her feel cradled.
A small dose of a sedative was given to Cayman to help her relax. It worked. She calmed down and went to sleep. I didn't know what was worse - seeing her comatosed again or awake in panic.
Her heart rate was so weak. Another drug was administered to her that would hopefully help draw out some of the build up of fluid in her head. The intracranial pressure on her brain was so dangerous it was preventing strong signals to her heart.
It was a relief when the EMT's finally arrived.
I gave Mike the most difficult kiss good-bye as I hopped into the ambulance with Cayman. The hospital was under construction so the helicopter could not land there. It was waiting for us at the airport just on the edge of town. The ambulance transported us between those locations.
The EMT's gave me quick instructions on what to expect during the flight.
"It will take 25 minutes...to Ann Arbor...loud in the helicopter...head set on...you won't be plugged into our conversation...you'll hear nothing...remember...nothing to worry about...only if you see us getting worried...no matter what...stay in your seat...if you need us...tap on my shoulder..."
I had to make a conscious effort to hold my concentration on his words. My exhausted mind wanted to escape and not listen. I just wanted to close my eyes and for someone to wake me when we got there.
Panic tempted to overtake me when I saw the inside of the helicopter. We're going to ride in there? Cramped in a tiny space with no guarantees that my little Cayman will not die while we hang suspended between Heaven and Earth. Lord, how am I going to do this?
"I am with you and will watch over you wherever you go..." (Genesis 28:15)
I climbed in, not giving another opportunity for my mind to dwell on my butterflies. God was with us and He became my dwelling place. He had been too faithful for me to doubt Him now.
The helicopter took off. I felt dizzy as I watched the ground leave beneath us. I closed my eyes to pray. I felt so broken leaving Mike behind. I worried about how he would handle the two hour drive to Ann Arbor. He had it so much worse than me. It's a desperate feeling when miles separate a family during such a tough circumstance. My thoughts kept returning to God's declared promise "I am with you and will watch over you wherever you go...". I prayed that over Mike and asked God to carry that promise out for each one of us.
I pulled my Bible from my purse. As I glanced out the window, I held it close to my chest as I watched the cars and people below shuffle in all different directions lost in their normal lives. I opened the silver edged, tissue thin pages of the Word of God and read the first passage my eyes fell on.
Lord, you have been our dwelling place throughout all generations. Before the mountains were born or you brought forth the earth and the world, from everlasting to everlasting you are God. (Psalm 90:1-2).
It was an affirmation of the security of my life lived close to the Lord. He has been my dwelling place for so long. The shelter from my storms. And He would be again in this time.
"What? What'd they say? There's a heartbeat?" I spoke quickly through heavy breath as if I had just finished running a race.
Mike motioned for me to come closer. "I guess so, I think so." He seemed nervous as he spoke.
It was unusual for me to see Mike so frazzled. It's usually me that is falling apart while he holds things together so well. His natural strong, optimism in him had grown faint though when he carried his little girl's lifeless body through the E.R. doors.
I peeked into Cayman's room reluctantly but yet with an earnestness to find permission to hope. The last image I had of her terrified me. The appearance of her blue, lifeless body made me shiver and I wanted to forget it. I could not look at my little Cayman like that again. I wanted to erase it. Pull it out from my memory bank.
Standing just outside of the doorway, I slowly lifted my eyes toward Cayman. I could see only her legs and feet through the pack of medical staff surrounding her bedside.
She was pink.
Beautiful pink!
There was a brief parting and I caught a view of Cayman's face. They were in the process of intubating her.
I turned away again.
The nightmare continued.
At that moment I just wanted her to wake up, smile, show me signs that I hadn't lost her. Just one tiny glimpse.
Time continued to stand still. I felt like I was apart of a dream or a movie scene. It didn't feel like this could really be happening.
I slipped into a part of time that felt as though my existence became separated from the present and all the movements occurring around me. There were voices, questions, people - it all continued. I knew time was passing but I couldn't figure out how to be present with it. I watched it all from a blurry lens.
My mind is a little fuzzy on the next few minutes. I do remember dialing my mom's cell phone number. I didn't talk for very long. I was making such a conscious effort not to pass out and retelling our reality was too much for me to try and hold it all together for that moment.
I knew the race for Cayman's life wasn't over, but the joy that its final end had not come yet, gave my legs strength to continue standing.
A nurse guided me by my elbow toward Cayman's room. I was being given permission to be with her. That's all I needed to snap out of the haze I was in. I found myself appearing next to Cayman's side nearly instantly as I moved quickly. I picked up her cool, lifeless hand and held it in mine. She laid there sleeping. With my other hand I rubbed her head in the same familiar way that I do at home when we cuddle in the rocking chair.
As I sang to her beautiful pink face, a few tears trickled down my cheeks. It was hard to tell if they were tears of joy or of sorrow. A mixture of both I suppose.
Desperate to find solid ground for my thoughts to lean on in the midst of this chaos, I searched in my memory of scripture, for anything that could give me peace and assurance that God was still carrying out His promises in our lives.
A small smile appeared on my face as I recalled an earlier memory of that day before all this went down. God had already given me that morning what my heart was needing - the scripture that would sustain me.
I am with you and will watch over you wherever you go..." (Genesis 28:15)
(Earlier that day) When we left our house, all our bags packed, in route to Ann Arbor, we first made a stop at Mike's work. He had left his laptop there and wanted to have it for the time away. While Cayman and I waited in the van, I felt such an urgency to find a scripture that voiced God's promise of watching over us. I pulled out my Bible that I packed in my purse and found Genesis 28:15.
God knew the storm was about to hit and He began to provide our shelter from it.
Mike and I stood at Cayman's bedside holding on to each other. My mom arrived at the hospital. I felt grateful to have her there.
Cayman was in critical condition. Her heart rate was holding on in the low 60's.
Orders for her to be air lifted to Ann Arbor were put in and then we waited. Waited for what seemed to be an insane amount of time for such a critical situation. Communication with the flight was put through again to make sure they were on their way.
I continued to pray and remember...
I am with you and will watch over you wherever you go.
"And Lord, if you will, please pull that helicopter out of the air and set it down here safely. We have got to get to Ann Arbor!"
When the Lord wills it...
Look at what one week in His healing hands can do...
There is much peace we feel at home. There is a sort of calmness here. A slower pace we feel as we bask in our blessings.
All around me I am reminded of this past week's miracle God has done in our lives.
The week Cayman experienced a shunt failure severe enough to result in cardiac arrest.
If you saw my post briefly today then I would guess you might be wondering where it went.
I decided to unpublish it until I can get the video glitches worked out.
There was just too many errors in it for my liking.
Stay tuned...
We. Are. Going. HOME!!
The VP shunt is working, we are pushing the fluids, and Cayman is feeling better!
Daddy asked Cayman yesterday, "Do you want to go home?"
She signed "more".
"That's right baby girl! More home sounds good. Let's go."
Again...
THANK YOU
THANK YOU
THANK YOU for the prayers, the thoughts, the concerns. I cannot even begin to express what it has meant to us and how well it's carried us.
On a side note, Cayman is grounded for at least 10 years for scaring Mommy and Daddy so badly! No more of that is allowed!
Cayman has officially been moved to the floor. It's not just talk or a rumor anymore. She's finally there.
She's still not taking any fluids orally though and her only IV blew now. So we told her the pressure is on. She's got to pick up the pace or she'll be getting poked again.
But right now she's very happy sitting up in bed brushing her teeth.
*Posted at 8:00 a.m.*
About 15 minutes after I posted the below update, little Cayman had a massive poo! I mean a real catastrophic failure of diaper function to hold it all!
Oh how wonderful that is!
And then shortly after she laid right back and drank an ounce of her bottle!
Ah, what a relief!
If she keeps this up we'll be heading out those hospital doors real soon.
Feeling hopeful.
Fearful that I will not be able to discern immediately between regular sickness and shunt failure (since the onset symptoms are the same), the doctors have given us permission to be over reacting parents.
Cayman declined quickly with this shunt failure. From the first time she threw up til she coded was less than six hours. That's a fast decline. Typically that level of seriousness of a shunt failure doesn't set in that quickly. But for Cayman, for whatever reason, it did.
I had to laugh at the irony of it. She was born untypical. And in her world of untypical she's even untypical there too. Silly girl. She likes to keep us guessing.
So now on this afternoon when she started not feeling well our flags went up especially since she had a great morning.
We paged the Nurse Practitioner from Neurosurgery. She came to Cayman's bedside to examine things and evaluate why she might be having a set back.
The meal plan orders have now been changed. Cayman is back on a liquid diet.
She ate a big breakfast of sausage and pancakes this morning. Probably not the best meal choice for the day after surgery since the bowels and digestion slow down.
So possibly her abdomen is appearing extra full simply due to the post-surgical reasons (gas, bloating, slow peristalsis, etc.) or it could be the horrible possibility that her scarred belly is not absorbing the fluid the shunt is draining into it.
So we're keeping a watchful eye on her, and of course praying, and now just waiting to see if the noticeable symptoms resolve themselves or get worse and point to another shunt failure.
As always, I'll keep you posted as we know more.
For now we just wait.
Touching noses with the bunny.Cayman is feeling much, much better.
And now that she is feeling better that means I am finally feeling my exhaustion.
It's the crash after the storm.
Not emotionally. I'm doing well. I mean of course I feel some nervousness about going home and being two hours away from the people that can give Cayman the type of medical care that her life depends on. But even in that, I am resting in the arms of the very One that has shown so many times over that He is with us.
It's just a complete physical exhaustion that only a long night's sleep can cure.
But both Mike and I are taking care of ourselves well though. Getting naps, eating, and processing. It has been an unbelievable amount of emotions. I am told it will take time. Time to process. Time to heal. Time for the haunting dreams to dissipate.
When I sit and think about what it could have been...
The empty arms, the empty laps, the empty hearts, the empty van.
When my mind thinks of our house as it is right now, I think of the balls thrown around our home by little Miss Cayman, the bottles in the cupboard, the unwashed clothes of hers sitting in the hamper, the stroller in the back of the van, the wagon in our garage...
All these things...
Their presence would have been terrible to return to without our little Cayman in our lives anymore.
But that's not our reality and when I come to that moment of realization all over again of what it could have been and where we are right now, I break out in praise all over again!
We feel so blessed!
Your prayers, we thank you again for them! They have empowered God's healing as well as left us feeling a support that has touched our hearts.
I've taken so many pictures and videos of this miracle we've witnessed this past week. I'm working on a slideshow to share with you. Stay tuned for that. I'll be posting it when I get the chance to finish it.
Combing away her surgery hair!Cayman's surgery went well.
She's back in her hospital room. She drank 4 ounces already and is now working on dozing off.
And I'm happy to announce that she has been officially promoted to the VP shunt club.
The doctor also put in a fixed shunt valve (1.5) instead of a programmable one.
Yippee!
The Pediatric Surgeon went into her abdomen through her belly button with a scope to check out the amount of scar tissue. He was able to break down the existing adhesions and create (in his exact words) "a wide open space".
Now let's pray that it works perfectly!
Oh and the surgery was just early enough that Cayman's regular Neurosurgeon was able to do his part of the operation before he had to leave for the afternoon. We adore his dedication.
Love,
Kristen
Cayman was taken to surgery at 12:40 p.m. (E.S.T.).
Dr. Maher, Cayman's regular Neurosurgeon, is not performing the surgery for reasons that I stated in the below post. We met and talked with the new surgeon.
We also met with the General Surgeon, who is over the belly part of the operation for the placement of the distal end of the shunt. A VP shunt is the goal. He will first look into Cayman's abdomen with a scope inserted through her belly button. Hopefully he will find a clear passage around the scar tissue to place the shunt. Oh man are we praying hard for that!
If her abdomen does not look obtainable for a shunt then they will scan the surrounding vessels of her heart and find one to place it there.
It's been an emotional morning.
Prayerful.
Watching.
And waiting.
Thank you for being with us through this time!
Cayman's surgery is scheduled for 2:00 today.
Her Neurosurgeon has been trying so hard over the weekend to get it moved up to a much earlier time but they can't accommodate.
He's flying out this afternoon. He'll only be gone for 24 hours. So if they can't get an earlier operating time for her we have the decision to make to wait til tomorrow and her regular Neurosurgeon can perform it when he returns or to stay with the 2:00 time today and have one of the doctor's partners do the surgery. He's assured us that he feels very confident with this other Neurosurgeons. I believe him wholeheartedly but it's just not the same as having your child in the hands of the surgeon you place the most confidence in. The one we know.
We're still hoping and praying that an earlier time will open up this morning.
Ultimately, my peace and trust is in God, the One that can coordinate all these things to go according to his perfect plans.
And I'm pleased to bring you Cayman's latest progress update:
She has returned fully to her baseline. Isn't that amazing? There's nothing she is not doing that she did before all of this. She's sitting herself up in bed and has even taken a few crawling steps once.
I am beyond belief touched, humbled, and amazed.
A few days ago I left the hospital one evening for the first time since we got here.
I felt some anxiety about leaving Cayman's side. I know she's in good hands here. But you see, I lost her only a couple days ago. For a moment in time she was not with us anymore.
My grip on her is very tight right now.
But I desperately needed to go buy some clothes to help me get through our stay here for the upcoming days. When we packed for Ann Arbor we were expecting just the same old usual straight forward shunt revision that had us in and out of the hospital within two days.
Cayman's had five shunt revisions so it's not a new experience for us and we're familiar with how these things usually go. We were not expecting the kind of drama that this shunt failure brought forth.
So on our third day here I was experiencing a clothes shortage. The hospital has laundry available but feeling the most comfortable sometimes means having the assurance of enough necessities without having to tack on more chores like doing laundry.
So on Saturday evening when my mom and sisters came up for a visit, we briefly ventured out to get me some clothes at the nearby Old Navy store (which happens to be my favorite and I must say I am thoroughly enjoying my new yoga pants. Their comfort has tempted me to break out in the downward facing dog pose right next to Cayman's bedside. Ha ha. Just kidding about the dog pose. The comfort part though, I am totally serious about).
While out, I needed to make a stop over at Trader Joe's, a natural health food grocery store. They stock the kind of milk Cayman drinks. We were running low on it too because well like I said, we just weren't planning for this kind of extended stay.
I was feeling anxious to get these two errands done as quickly as possible and return to Cayman's side.
When I entered Trader Joe's it was packed. A many number of cashier lanes were opened with lines extending long.
My heart sunk.
I was tempted to just leave.
I was so anxious to get back to the hospital. Waiting in line was going to feel tortuous. But Cayman needed her milk. She was drinking her bottles well and it was imperative to her strength to keep her on a familiar diet.
So I did something very untypical for my shy and timid personality. I approached the customer service and asked the man behind the counter, "Is it possible for you to ring me up? I have a daughter in the hospital at U of M. I came here to resupply her milk and I'm really anxious to get back to her."
Apologetically he replied, "I'm sorry, I don't have a register over here..."
Cutting him off in mid sentence and feeling already a little sheepish about asking, I replied, "That's ok, I'll just wait in line. I'm not trying to cause trouble." I said to him reassuring my intentions with a smile.
He said to me, "Oh no, don't worry about that. Just go."
I was puzzled.
"Go?" I asked.
"Yeah, go. Put your milk in a bag and just go. You should be with your kid."
Feeling confused and nervous about seeming cantankerous, I turned to follow his directions by grabbing a paper sack off the closest cashier lane just a single step away from me.
With great apprehension I stopped and turned back toward the man first and asked, "Isn't that shop lifting?" I just could not comprehend this unbelievable, unheard of gesture he was instructing me to do.
He waved his hand at me, signaling complete acceptance for me to do this. "The next time you're in, just tell us what you took and we'll take care of business then. You've got more important things going on right now. I know I'll see you again, I'm not worried."
At that time another employee came up from behind me. Taking the basket filled with the cartons out of my hand, he began to bag the milk for me.
I stood there for a small moment, holding my two sacks, one in each hand, feeling the sheer shock over the vast compassion I was being shown.
I must have showered them with a thousands thank you's as I bounded quickly out the door.
I still just sit in awe of that unbelievable trust and kindness that man showed to me - a complete stranger I am to him.
So many places I keep turning and finding pieces of my Lord loving on me in ways that my heart may not be able to comprehend such adoration but it leaves me completely wrapped in a sustaining nurturance.
Tomorrow (Monday) is the big day.
Cayman will be taken to surgery to place her shunt back into her body.
In one sense we are greatly looking forward to this. Having her shunt externalized is stressful. We stand guard at her bedside whenever she is awake to be sure she's not tugging at it or her head dressing. It has not always been an easy task of preventing her from doing this sometimes. But isn't that beautiful to hear? I mean, she's feeling and acting that well to have spunk and curiosity...and even annoyance. She absolutely hates the head dressing. I don't blame her. That must feel just awful, hot, and itchy. I know she'll be much more comfortable once she can get that off.
On the other hand, we have big decisions to make with the doctors on where to replace the distal end of her shunt.
Putting it back into a vessel surrounding her heart (which is where it has been) is not ideal. It's a temporary site and will not grow with her resulting in the need for more shunt revisions in the future. And since it's within a blood vessel it poses a risk of developing blood clots.
The other option, which is to put it into her abdominal cavity, is the ideal situation because it is more permanent. They can coil extra tubing inside of her so that as she grows the tube stretches with her growing body. However, the last time the shunt was placed there (June of 2008) it failed within a couple days. There was a great amount of scar tissue in her abdomen from the belly surgery she had when she was a day old. The scar tissue prevented her body from absorbing the cerebral spinal fluid (CSF) resulting in a plugged, failed shunt. So the shunt was replaced back into Cayman's heart with the goal that someday it would be put into her abdomen when she had grown enough to have more room in her tummy to accommodate the shunt around her scar tissue.
So the big question now is, has Cayman grown enough for it to be a successful site for her shunt to be placed there?
And that's where we greatly covet your prayers for tomorrow.
We haven't heard what time Cayman will be taken to surgery but we will do our best to post updates.
I feel as though I must sound redundant, like a broken record, when I say thank you. The multitude of prayers have been tremendous. God is truly carrying us and you are helping this time to be so much easier for us. So with great heartfelt emotion, I thank you again! I'm storing up so many hugs, wanting to embrace you all for the support you have given our family.
I pray for God's greatest blessings to be on you.
And here's a clip-it of Little Miss Busy Hands in mild action...
Last week, before all this happened, my mind had wandered to all that it means to me personally to be a Mother. I took a moment to put some of it into words. I thought it might be appropriate to share it with you today with it being Mother's Day and all.
**Warning: It's a LONG one**
One week ago on May 2, 2010, I wrote:
I once read:
The moment a child is born, the mother is also born. She never existed before. The woman existed, but the mother, never. A mother is something absolutely new.
I think each mom has their own collection of precious memories and stories they reflect upon when they remember their journey from woman to mother.
Recently my memory reminded me of a gloomy time back when I was twenty-eight weeks pregnant.
Cayman's diagnosis had gone from bad to worse.
The viability of her life after birth was unknown.
My world was falling.
My spiritual-heart building.
Conflicting emotions...
Fears running deep...
Trying to hold onto a supernatural faith that God is always there. His plans prevail for our good.
I was a mild, pain-stricken mom-to-be learning to trust in the One, the only One that knew how things would turn out for this precious life she was carrying.
I can remember so clearly...
The heartache.
The pain.
The yearning.
My heart never wants to forget it. Not even the terrible things. Or the fears that went deep. Because it's in those things that the wonder of the gift that Cayman's life is and the capacity for which I can appreciate my world as a mother, is unlocked.
At twenty-eight weeks gestation, we had known for 8 weeks that our baby would be born with brain damage. We had been watching through ultrasound the fluid in her head stay in a low to moderate level of severity. The fluid seemed to be stable, only slow growing and that gave us hope.
We held tightly onto that ranking of low to moderate. We kept hoping and believing. Unending fervent prayers for God to heal her, fix it, make that fluid drain just as it naturally should.
Those ultrasound appointments were frequent, taking place about every two weeks. They were meant to keep an eye on the amount of fluid accumulating in Cayman's brain. It felt pointless in most ways, since pretty much all we could do was just watch.
We started to obsess over ventricle sizes and head circumferences.
Numbers.
Until that twenty-eight week ultrasound when our minds were weighted with far more medical terms than we've ever wanted to know.
I laid down on the exam table, routinely rolling up my shirt tail to reveal my ever-growing belly. We had just switched my medical care from South Bend to U of M. This was my first appointment at the U of M hospital. It had been four weeks since my last ultrasound. Procrastination on my part as I transitioned my care at this new facility slowly. I wanted a break, I needed a break from these appointments. What an emotional switch that was compared to the thrill we felt at my first ultrasound at 10 weeks that ended with the very excited Mike saying to the technician, "When do we get to have another ones of these done?!"
When we weren't at these appointments, it was hard to believe anything was going awry inside, when from the outside everything appeared so normal. So healthy.
The technician squirted the blue, goopy gel over my belly. "Ok, let's see this cute little baby." she spoke to us in a charming tone as she placed the wand over my stomach and the image of our little Cayman appeared on the screen.
I appreciated the technician's chipper and casual demeanor. I longed for a happy normalcy in these routine appointments.
The ultrasound started out by first looking at the baby's face, then her toes, and little hands. We oohhhed and ahhhed, smiling at that little bundle of joy that we were carrying. The technician printed off a stack of nearly 7 or 8 images for us including our first 3D ultrasound pictures.
Oh what joy we felt!
She was beautiful! So perfect!
Then it came time for the more serious part - looking at Cayman's brain. As soon as the image of it appeared on the screen, the room fell silent taking along with it the laughter in our voices.
Mike was the first to speak. "Wow, the fluid on her brain has really increased.".
I recall how strong his voice seemed to me. It didn't quiver or sound desperate. I clung tightly to his hand wishing to return to the laughter and happiness we felt just seconds ago as we watched our baby suck on her fingers and give us a little smile.
Returning the squeeze to my hand, Mike looked at me and I could see the pain in his eyes. I know his heart. He loves to fix things and make them better. But this - this was out of his control. We needed God to work a miracle like only He can do.
That ultrasound appointment lasted nearly an hour. I grew weary laying on that table for so long looking at image after image of all the parts that seemed less than perfect.
Since this was my first appointment at this facility they wanted to do their own thorough scans and measurements of everything. Much of that time was spent scrutinizing over the new anomalies that were being discovered. Twenty minutes alone was reviewing, recording, and debating over the appearance of Cayman's heart. When the doctor returned after consulting with his other colleagues privately, he gave us the long list of our baby's birth defects:
~One kidney.
~A severe level of fluid compressing the very little amount of brain visible.
~The absence of the middle portion of the brain.
~A malformation of the stomach where it connects to the small intestine.
~And a possible heart defect.
He spoke tenderly to us as he explained, "...all of this is concerning for a reduced likelihood of survival post-natally for your baby."
There was no holding back. The tears flowed.
Suddenly just feeling concerned over ventricle sizes seemed not quite as unbearable anymore compared to the now growing list of medical complications our baby had.
She was looking at needing three surgeries shortly after birth with the debate of which one should come first. One for her brain, one for her stomach, and one for her heart.
Her brain was being compressed and further damaged from the build up of fluid. It was imperative to get a shunt placed to relieve her brain of that pressure.
Her stomach was unable to digest anything and she would not be able to eat until she had that surgically fixed.
And at that point, the severity of her heart condition was unknown.
The doctor explained all of these issues and how each carried their own risks and concerns.
Chances of our baby surviving all of that seemed slim.
I felt so broken and forgotten by the Almighty One. I had plenty of faith in who my God is. I knew He could fix my baby. He could make it turn out alright.
But would He?
The doctor showed us to an office where he introduced a Genetic Counselor. We were offered to ask questions or share any thoughts we had.
Thoughts? Oh yeah, I had lots of thoughts but none of them seemed clear enough for words.
I sat silently reflecting on God's promise...
For I know the plans I have for you, declares the Lord, plans to prosper you, not to harm you. Plans to give you hope and a future. - (Jeremiah 29:11)
"How is that true in this situation, Lord?".
That question pounded through my head as I sat very still, listening to the Genetic Counselor answer the questions Mike had. She handed me a stack of printed papers. She had put together an educational packet explaining each diagnosis that was found. I smiled meekly, thanking her for them and the time she spent helping us.
On the drive home Mike turned down the radio and with his eyes never leaving the road he asked, "What are you thinking?"
I paused for a moment searching for the words. The hardest thing for me during that era was trying to compile all my jumbled thoughts to sum them up into a single answer.
After thinking for a moment I said, "I think God has more in store than I can understand right now. His ways are wonderful, I know that. I just can't see it yet."
That next day, the tears were still falling down my cheeks as I processed the doctor's words.
My foot pressed on the accelerator of our new van, the weight of the pedal feeling heavier than normal as I drove down a desolate country road. This van, it was the first vehicle we had bought with our growing family in mind. My thoughts returned to the day when we had purchased it, just a few weeks prior to the finding of Cayman's brain diagnosis.
Mike happily allowed me to drive it home from the dealer's lot. I felt exhilaration as I glanced in the rear view mirror, smiling as I imagined my baby in the back. I could see her there, buckled soundly in her seat, just waking up from a nap. At that point and time I didn't know if she would be a boy or a girl. That part wasn't clear to the imagination. But I could clearly dream of all the CD's we would listen to, singing as we traveled. I imagined the road trip games we would play as a family. The conversations we would pass between front seat to back seat.
That was a simpler time of planning, preparing, and dreaming of parenthood.
Things had changed so quickly for us. My dreaming and planning took on a whole new direction.
Twenty-eight weeks pregnant, my world was falling taking along with it my ability to dream.
I looked in the rear view mirror again wanting to return to the happiness, the care-free imagination of my baby in the back seat.
The image of her was gone.
Manifesting her presence there in my imagination hurt too much. My fear of losing her began to place a barrier between her and me. I didn't want to feel attached to her anymore. I would never be able to let go.
I tried to prepare for the worst.
I imagined our empty arms.
Our empty laps.
Empty hearts.
Empty van.
Only vacancy stared back at me in the rear view mirror.
I didn't know how to dream anymore. And it hurt too much to try.
I don't know what it's like to lose a baby, but in that moment I imagined the grief would lie greatly in the lost dreams that will never be fulfilled on this side of Heaven.
Why dream if it would only be another reminder of what would never come to be if she passed away?
I stopped dreaming. I stopped imagining her growing up.
But I never stopped singing to her. I never stopped praying over her. I never stopped touching my belly, reaching, longing to hold her close.
My day's purpose became in filling her life with love for as long as God allowed me to carry her beating heart here.
I turned my face toward Heaven daily, knowing I had a Father that once went through the pain of losing His One and Only.
Cayman, she was our one and only. I thought of how that would significantly effect us if we lost her.
There is not one birth order exceeding another one that could possibly make the pain easier over losing a child. But, can it possibly be made worse when it's your one and only?
My mind and heart were filled with so much hurt and fear, I struggled to find the words that would help untangle it all. Songs ministered to me greatly then. They provided the words when my heart was too weary to express.
Particularly that day when I felt the grief of losing the image of my baby in the rear-view mirror, "Never Alone" by Barlow Girls played on the radio:
Wishing a beautiful day to all you precious mothers out there...Yesterday night, Mike settled into the reclining chair with our little Cayman for the first.
It's quite the process of moving and situating all the wires and things in order to hold Cayman. And then there's the fact that she was so terribly sore from the CPR that she did not seem very comfortable being touched and moved. So we've left her rest in her bed.
Then yesterday night, Cayman asked to be held. Her hands stretched out far toward her Daddy.
So Mike settled into the reclining chair. The nurse repositioned all the tubes and wires that must go everywhere that Cayman goes. Then we fluffed and tucked pillows all around them, bringing optimum comfort.
I was about to head out to our hotel room for some sleep (such a blessing to have that right connected to the hospital). Mike whispered to me being careful not to awaken the sweet precious angel asleep in his arms.
I turned back. Mike smiled and then paused. He looked at Cayman. While snuggling her in a little closer he said, "Oh Mommy, the last time I held her in my arms she wasn't breathing." Tears formed and he stopped for a moment, feeling too choked up to talk.
I smiled and affirmed to him I understood what he was trying to say, "You didn't know if you would ever get to do this again huh. I know, it's just too amazing for words."
And that is how I found them in the morning when I returned.Pictures from yesterday and some today...
Smiling and playing with her toy.
Drinking her bottle while looking out the window.
Blowing Daddy a kiss.
Giving Daddy a fist pump.
Playing Peek-A-Boo"Mike, she's not breathing. Her lips are blue!!"
"Get her out of her seat, Get her out of seat!" Mike frantically shouted.
I felt deranged as I struggled to find the release button to pull the straps loose. We've only had Cayman's car seat for a short time and its differences compared to her infant seat have not become familiar to me yet. My shaky hands worked quickly though and got her unstrapped. I reached under her body and lifted Cayman out of her seat. Her head plopped backwards and her arms and legs just hung there. My little toddler has never been more heavy and awkward to move. Twenty pounds, 34 inches of complete dead weight. It was in that minute when I felt my body begin to shiver.
Mike took her from my arms and ran for the revolving doors to the hospital. It was not the smart route for us to take as those doors automatically move at a speed much too slow for such an emergency. It was the most noticeable, most obvious entrance and in our panic we did not see the regular doors next to the revolving ones. I stepped into the next compartment behind Mike and Cayman. I pushed the revolving doors with all my might, unsuccessfully trying to move them faster.
When in the clearance Mike ran with Cayman down the hallway to the E.R.
He disappeared quickly from my sight as I was still caught within the revolving doors. Out of breath, I put my head down and pushed with all my might, formulating plans to break the glass if the door would shut down against my force.
Once in the clearance I felt flustered by the construction's plastic tarps all around. We've been in this hospital's emergency entrance before but since the remodeling it seemed different to me and I felt lost.
All the people around watching our frantic scene began pointing and shouting to me, showing me the direction to go.
I ran - I ran with a mighty strength that I have never felt and did not even know my legs were capable of since my spinal cord injury 16 years ago.
I turned the corner passing by the window's view of the emergency room. I caught a glimpse of Mike's face. Cayman was not in his arms.
In my mind as I had been running I was thinking Cayman would just start breathing again on her own with ease as if she had only been voluntarily holding her breath. She would be okay.
The look on Mike's face - terror! And I knew everything was not okay.
"Where is she?" I asked Mike.
He pointed to a doorway straight ahead. I could hear Mike's wailing sobs become faint as I ran toward Cayman's room.
The level of fright I felt at that moment when I saw her nearly paralyzed me and I stopped running just a few steps from her.
Blue.
Blue all over.
And completely pale.
"Is there a heartbeat?" I asked.
"No." The nurse responded quickly as she turned toward the intercom and called out "I need a crash cart in here." She started performing CPR on Cayman.
The necessary force of the compressions were hard to watch - the brutal movements, Cayman's lifeless body.
I left the room.
Mike and I fell into each other's arms and just sobbed.
Nearly fifteen people appeared in Cayman's room almost instantly.
There was so much noise and commotion. I had to break out of Mike's tight embrace and walk just enough of a distance away to muffle the sounds coming from Cayman's room.
Praying, hoping, wishing.
Realizing that in the next few minutes we would be hearing the final words of pronouncing Cayman dead or that she's been revived.
Time stood still.
We were told it was less than a minute -around 45 seconds- that they performed CPR. It seemed so much longer.
And then we heard the most beautiful words ever -
She's alive!
