Tribute to Aunt Betty

Dear Aunt Betty

There are no words that could express how much you meant to us. There was no one more full of life than you. I hope to model the kind of love and devotion you carried with you your whole life.

You were a reminder and an inspiration to me that God works miracles. The doctor said you would never live to be 21 years old because of your damaged heart. Yet you lived to be the glorious age of 84.

I will never forget that Cayman's due date was your birthday. I will never forget the way your eyes lit up when you saw her for the first time. I was so worried about you getting tired sitting next to Cayman's bed in the NICU. But you insisted you were fine, and contently sat there for awhile longer.

We just saw you last Saturday. It feels like such a long time ago. How I wish I could see you one more time! Yet I know that would never be enough. I would just keep wishing for more.

How I am going to miss you! I already do. I know you stand next to our Savior totally renewed and completely healed. How I wish I could see you right now, looking so happy and peaceful.

I love you Aunt Betty!! I miss you!

March 26, 1924 - June 29, 2008

Cayman's Bear

Cayman loves her bear. Or maybe the more truthful statement is, Mommy loves this bear. It plays sounds that mimic the noises of the womb. I turn it on for Cayman only at night as part of her bedtime routine. It gives that breaking distinction between naps during the day and sleeping longer hours at night. Cayman still does not sleep through the night. She wakes up every 3-4 hours to eat but she goes back to sleep quickly. Each time Cayman is in the hospital we take her bear with us. She is familiar with that sound and it seems to be calming to her. It's next to impossible to keep a schedule in the hospital and we play Cayman's bear for her more as a comfort measure than a bedtime routine. So every time we return home from the hospital Cayman's sleep schedule is all messed up. But I think because of this bear it does not take her long to get back onto a night-time sleep pattern. Only a couple nights and she has it figured out again...awake during the day, sleep at night.

Bandages

My little sliced up baby is recovering very well at home.

The bandage and the bruising on the right side of her head is where the doctor removed her shunt.

The bandage on the left side is where the new shunt was placed. The bandages on her neck and chest is where the doctor placed the distal end of the shunt into Cayman's heart.

The little red dots and bruising on the right side of Cayman's chest is from the many failed attempts to replace the shunt back into her heart.
She also has bruises on both hands and both feet from the attempts to start an IV.
For obvious reasons you can see why it's been a rough week for Cayman in the hospital. It's nice to be back home. But she seems to have forgotten she is suppose to sleep at night, and be awake during the day. We'll have to work on that...again. :o)

Boxes

I love the feeling of organizing. It's what makes the work of unpacking fun for me.

As a child, I was a natural born pack rat. My mom could you tell you stories of what she would find in my closet, under my bed, or under my dressers. I could never throw anything away, especially if there was a memory that went along with it. For example, when I was in grade school my sister had bought me a snicker's candy bar at the concession stands during a basketball game. That unexpected act of thoughtfulness meant so much to me I could never throw away the candy wrapper.

I've changed a lot in my adult years. I am no longer a pack rat. I love to clear out, clean out, and organize.

One thing hasn't changed for me though and that is my emotional attachment to silly items that hold a memory for me. But my desire for a simple life keeps my pack rat ways controlled and find creative solutions so my memories are not cluttering the closets, literally.

I now take pictures of the items and scrapbook the story into an album. Then I can discard the item, and all my memories are carefully stored away in a scrapbook that sits on my bookcase. It's a much better way than storing the item in a cardboard box that has no purpose.

I love this quote:

"We don't really need much stuff. More stuff means more work, more chaos, and more stress" - Christina Logsdon

Going Home

The doctor came by this morning and said Cayman can go home. Yay! We're just waiting for all that discharge paperwork to be completed and then we're out of here!

The internet is suppose to be hooked up today at our apartment. I'm so glad. It's my connection to the outside world. Plus it helps the time pass when I'm pumping which is tremendously important to this terribly boring and restricting task.

Pictures

Daddy's Update

It was a late night for us. Mike and I did not get back to the Ronald McDonald house until 3 a.m. I think I failed to mention that Grandma Sue traveled up on Monday and stayed the night with Cayman in the hospital while a room opened up for Mike and I at the Ronald McDonald house. Grandma Sue stayed again last night. Mike and I had not intended to stay so late but Cayman was in a lot of pain. She whimpered and cried a lot. Her heart rate had moments where it drastically dropped (this is called Brady). She was given extra doses of morphine and while that did seem to help it still did not take the pain away completely. Then we noticed a lot of swelling on the side of her head where the new shunt was placed. It was so puffy that even the inside walls of her ear canal were almost touching. The on-call Neurosurgeon resident was paged. She looked Cayman over and did not seem to be concerned.

Daddy went back over to the hospital very early to be there for the doctor rounds. I could not make it out of bed. Usually I can push through my exhaustion but not this morning. But I was so happy to hear that Cayman is doing better. Grandma Sue along with the nurses are taking very good care of her. She is eating and her swelling has gone down.

She's going to be moved today from the PICU to general care. Then tomorrow, hopefully, we're homeward bound.

Shunt Revision #4

Cayman had her surgery this afternoon. The doctors were able to internalize her shunt this time. They completely removed it from her right side and put a whole new one into the left side of her head emptying into her heart. She's doing good. She seems to be in a little bit more pain than she usually is with a shunt revision, but that's understandable as they did work all over her body the last couple days: both sides of her chest, both sides of her head, and belly. In the E.R. it took 3 attempts before an IV successfully went into her tiny veins. Then it blew right as she was coming out of surgery so they had to start a new one. You can imagine how many bruises she has all over her body. It's hard seeing her so pale and bruised.

Before her surgery today she was smiling and talking though. I just love my baby's personality. She's such a happy little thing. I don't know how she does all this so well. She helps me be brave.

Sorry for the delay in the updates. I know I am usually much speedier about it. I'm feeling a lot of frustration right now. This is Cayman's 5th shunt surgery. Including her stomach surgery, she has now has had 6 surgeries in less than 4 months. It's an exhausting road and it's always the unknown of the future that drags me down. I have felt this heavy feeling before. It's not a healthy place I am aware. It keeps me from enjoying the parts of Cayman's age that are fun now. Mike wisely put it like this: "This situation is too large to live out of each day." That's true. It is a day to day thing. And I will get back to my more positive-mind set. I realize we have gotten very little sleep for awhile now. The move was exhausting and now our apartment sits with lots of unpacked boxes.

Mike, Cayman, and I are in dire need of another family movie night.

It's possible we may get to go home tomorrow evening. It all depends on how Cayman is feeling and the doctor wants to make sure she gets a full 24 hours of antibiotics in her. Since her shunt drained to the outside of her body, that does increase her chance of a shunt infection, so the antibiotics are important in helping to prevent that. We ask for specific prayers that she does not get a shunt infection. It is not a pretty thing. And thank you so much for the many prayers already! I think it's the reason why Cayman is doing so well!

I will try to post some pictures soon. I know how much everyone loves Cayman-pictures :o).

Cayman's ready for surgery tomorrow so she can get better and go home!!

Not Much of an Update

There is not much to update from today. A few praises though:

• Cayman's chest x-ray showed her lungs looking healthy. There was some fear and risk because of how long Cayman was in surgery with the doctors operating near the lungs.
  
• Cayman has drained 300 ml of CSF off her brain since surgery last night. I believe that is over 10 oz. That is a lot of fluid!! She is acting much more like herself not having all that pressure in her head.

We stayed at the hospital last night. It was midnight when Cayman was finally out of surgery. She is in the PICU and arrived to her room a little before 1:00 a.m. It was a very late night and it was too complicated to make arrangements to sleep elsewhere. Besides, it was impossible to leave her knowing everything is not fixed and all better for her.

The doctors are planning to take Cayman back to surgery tomorrow, possibly in the morning. They don't have it fully figured out yet where they are going to put the end of the shunt. Right now the top choice sounds like relocating the entire shunt to the opposite side of her head and having it run into the heart from there.

Thank you so much for the many comments. If all of you only could realize how much joy we get from hearing from so many!! The hospital is such a sad place, a stressful place, a lonely place. Your comments help us cope. Thank you! Keep 'em coming :o).

Surgery News...

Cayman is out of surgery, but not with the best of report. She is alright, but there was some complications getting her body to accept the distal portion of the shunt. There is a lot of scar tissue in her belly so that doesn't work to replace the shunt there. The other and best option was to put it back into her heart. However, there appears to be blood clots or something in her veins surrounding her heart. So that option doesn't work. So right now the doctor put the shunt coming out externally at her neck. The fluid drains into a bag. Over the next couple days they will get more scans, x-rays, etc. to explore other options.

Shunt Revision #3

Daddy and I brought Cayman to the E.R. today. She's in surgery right now. The CT scan showed the distal portion of her shunt (the part that was just put in her abdomen 2 weeks ago) is all balled up not allowing the fluid to drain. The doctor thought maybe the scar tissue from her previous stomach/intestine surgery caused the tubing to ball up like this. They're putting the shunt back into her heart. Major sadness! :o(

We are moved into our apartment as of this past Thursday. It was a very exhausting move...lots of labor, lots of worry over the house closing, and lots of worry over Cayman's shunt. We were noticing signs of shunt malfunction a week ago which is why we took her up to the doctor on Monday before the move. However, Cayman's neurosurgeon was on vacation so we met with one of the nurse practitioners. It was a forceful conversation, trying to convince her that she should dial Cayman's shunt down so there would be more drainage in her head. Mike and I strongly felt something was not working right. She did dial it down a half a notch, and there was no change. Grandma Cindy and I took Cayman to the Neurosurgeon this past Friday and he dialed it all the way down, and still no positive changes came from that. Her head measured 50 cm today!

Happy Father's Day

Daddy with his Father's Day Gifts

To Mike,
I first knew you as my brother-in-Christ, then as my friend, boyfriend, fiance, and husband. My favorite has been getting know you as a daddy to Cayman. You are the kind of father that all those "World's Greatest Dad" T-shirts were made for. I love you so much!"
Always yours,
Kristen

Busy as a Bee...Maybe Busier

This week we will be...

• taking Cayman to her Neurosurgeon on Monday. Her head circumference is the largest it's ever been...even more than it was at birth. She's acting fine though..smiling, eating well, etc. so we're confused as to what is going on with it.
  
• closing on our house. In order to keep the deal moving forward we had to take a much bigger loss than we desired. The market looks so bad right now so we decided to take the hit and not risk it sitting on the market for many more months. So after Cayman's Dr. appointment we'll travel to Indiana, spend the next couple days out there: renting a truck, packing it up, closing on the house
• then drive back to Ohio to pack up our stuff at Mike's parents'
  
• and move it all into an apartment on Thursday.
  
• Then Mike goes to work Friday night
  

To my Northwest Indiana friends: I wish we had the time to come and visit all of you before we permanently move from there. You are very welcome to stop by and see us at the house and meet Cayman. Please call first to make sure we'll be there. If you don't have our new cell numbers, email me and I will send it to you. I will warn you, if you stick around for any length of time we may just put you to work :o). We're going to miss all of you and hope to stay in touch.

3 months old

Cymbalta

Where does depression hurt?
-Everywhere

Who does depression hurt?
-Everyone

It's never a great day when you can relate to a Cymbalta commercial.

We've been hitting some extra depressing days lately. It started out with Cayman needing to go back to surgery. We're home now, and that is great, but there's some concern with her shunt. Hopefully it's working properly. Her head size is not decreasing much and there's extra fluid built up around the track of the shunt. Hopefully these are just things that are going to work itself out as her body adjusts to the new shunt.

How bad would that suck if something was wrong already and she was taken back into surgery?

More depressing news is there's some things slowing up the closing process of our house. It's a bit shaky and it might even fall through. Closing on the house could still work out but only if we choose to take a harder hit financially than we were expecting. That is very depressing. The endless medical bills have already done their share of damage to the pocket book.

So right now Cayman's new shunt seems uncertain, selling the house seems uncertain, and getting a place of our own seems uncertain!!!!! This is not how we saw this week going for us!

I saw this video. It made me laugh. I think I know how the dog feels. :-)

Discharged

Tuesday June 10, 2008

Cayman's discharged from the hospital. While Daddy pulled up the van I quickly snapped a picture of Cayman with Big Bird that is in the lobby of the children's hospital. I bet you can guess why I had to do this while Daddy was gone. :o)

Hospital Mobile

The doctor orders are to keep Cayman laying flat so her head fluid won't drain too quickly as her body gets adjusted to her new shunt. We can hold her as long as we keep her in this horizontal position. It is difficult to find a comfortable position for both her and us, so to help her be more content just laying in bed the nurse brought her a mobile and she loves it!!

Cayman's Faces

Since everyone loved all of Cayman's many faces in this post, I thought you would enjoy another one.

General Care

We're still at the hospital, so that means the waiting continues. We're waiting to hear from Cayman's doctor of when we get to go home. It could be today, which would be great!! Cayman is in general care, which is not exactly as "luxurious" as the NICU or Moderate Care, which is where Cayman was the two other times she was in the hospital. Here's the difference:

• NICU-the nurse to patient ratio is 1:1 or 1:2. The nurse watches for any and every tiniest of needs a baby has. The nurse's station is right there in the same room as the patient so she can quickly notice if the baby needs anything.
  
• Moderate Care- the nurse to patient ratio is 1:2 or 1:3. The nurse again watches the babies very closely and can take care of their needs promptly. The nurse's station is a room that opens up to the patient's room
  
• General Care- I'm not sure what the nurse to patient ratio is, but it must be a lot because the nurse is hardly around. Cayman could need something and it would be a long wait for her until the nurse would even notice. The nurse's station is down the hall so she would only be able to tell if Cayman needs changed or feed if she made a special trip in to see. So Mike or I have stayed with Cayman around the clock.
  

If there is any advantages of being in the hospital with Cayman, the biggest one was always being able to go back to the McD House and gets some sleep and return whenever we wanted, while feeling at ease that Cayman was being cared for well. Mike and I don't mind the around the clock schedule with Cayman. It's just harder to do in the hospital than at home. For example:

• Cayman wet through her diaper and her hospital gown. We asked the nurse for another gown. Many minutes later she returns to say they are all out of the baby gowns. Daddy suggests she go to the floor below to Moderate Care where they have stacks of the baby gowns right in the patients' rooms. Finally after more than half an hour we get some clothes back on Cayman.
• When Cayman gets hungry we page the nurse and wait for her to bring the bottle because they store the breast milk in a refrigerator that is locked so no one can tamper with it. If the nurse is not busy with another patient the bottle comes quickly, but if she is Cayman has to wait. Then once the bottle comes it's cold and we heat it up in a cup of hot water.
• To get some sleep there is a built in couch next to Cayman's bed. It's narrow and short in length, so sleeping isn't the best.
  

At home, we know our routine, we don't have to wait on a nurse for anything, we have our bed, and we have Grandma Sue always eager and ready to take care of Cayman while we rest. The only thing is home doesn't have air conditioning.

But our vote is "let's go home today"!!!!!

Shunt Revision #2

Waiting...that's what ya do at a hospital.

8:00 a.m. we arrive at the Neurosurgeon office. Dr. Maher puts in the order to take Cayman to surgery.

We wait.

10:30 a.m. the Nurse Practitioner meets with us, goes over all the surgery paperwork, and a full physical assessment of Cayman to make sure she is healthy for surgery.

12:00 p.m. we buy lunch and take it to the O.R. waiting room.

We Wait.

1:00 p.m. the nurse checks Cayman in...weight, ID bracelet, more paperwork, etc. Her surgery is scheduled for 2:00.

We Wait.

2:15 p.m. we ask how the operating schedule is looking. They're running behind. Cayman's surgery is bumped to 3:30 p.m.

We Wait.

3:40 p.m. we ask again how the operating schedule is looking. Cayman's surgery has been bumped again now to 4:30 p.m.

We Wait.

4:20 p.m. I'm standing in the hall outside of the waiting room trying to find cellular reception, when Dr. Maher comes out of the operating room. He says Cayman will be next.

We Wait.

5:30 p.m. Mommy and Daddy give Cayman kisses goodbye and watch the nurse carry her to the O.R.

We Wait.

6:40 p.m. Dr. Maher returns to tell us that the part of her shunt that has failed is the distal portion going into her heart. He calls the Pediatric Surgeon to join him in the O.R. and evaluate Cayman's abdomen to see if he can place the shunt into her belly area instead of her heart, which is the ideal situation for a shunt placement.

We Wait.

7:15 p.m. Dr. Maher returns again to tell us everything went great. The distal portion of the shunt went into her abdomen smoothly without any problems. All the surgeons are so pleased at how well her belly has healed up with very little scar tissue.

We Wait.

8:00 p.m. we are directed back to the recovery room to see our little angel.

Cayman's Life Motto...Live Laugh Love

I want so much to understand God's heart. There are so many email forwards floating around out there telling of some great miraculous healing story God has done in someone's life and how amazing God is for it. While I do praise Him and rejoice with those families, I can't help but feel that is not where God's miracles stop. Perhaps He's a miracle worker much larger than we can see or understand. I've questioned God why doesn't He completely heal Cayman so that not a single anomaly is traceable within her body. What is His plans? Why can't my child live life to the fullest? Then a thought pops into my head. "Who says Cayman won't live life to the fullest...perhaps more than most." She's already accomplished so much. Let me tell you about my little miracle.

She smiled today.

And it was not because God healed her. Why would she be so full of smiles? She's been so miserable. You can see it in her eyes. Her head is almost the size it was when she was born, her skull bones have finger width gaps between them, her scalp veins are very prominent from the pressure, her soft spot is completely bulging from all the extra fluid build up, she rubs her eyes with the back of her hand often because of the pressure pushing on them.

But she smiled today.

And it was not because God took all this away, but because God has given her a great gift...the gift of love and laughter no matter what comes her way. Is that not so much larger in life to carry with ya than anything else? I count it a great miracle if one can learn how to "live well, laugh often, love much". My how that renews my angry spirit!! My prayer today is, "God teach her Daddy and me how to encourage and grow this beautiful thing you have naturally taught Cayman, so that she never loses it."

3 Months Old!

Cayman is 3 months old today! How did we spend it? In the E.R.!!! Yep, we're back in Ann Arbor. It looks like her shunt has fully failed. We see Cayman's Neurosurgeon first thing tomorrow morning. He is hoping to not only revise the shunt, but also take it out of her heart and put it into her abdomen. He has to check with her Pediatric Surgeon to make sure her stomach/intestines are fully healed. So until the doctors get this all figured out we wait with our very sad fussy baby at the Ronald McDonald house.

Cayman on the Web

Sometimes the Internet is a great source for information. I had never heard of Hydrocephalus until that day in the doctor's office when he told me my unborn baby had it. I went home and googled it. I found an awesome website created by a family that had a little boy, Owen, born with Hydrocephalus. Owen's Mommy created this website so that it would be a helpful source to other parents having a Hydrocephalus baby. The way she has brought together all the information and explains it so anyone can understand all that medical jumbo is amazing and truly helpful. Because of this website I have met many other hydro Mom's. They are my dear dear friends...my support group really. They know and understand. This is the same website that I have spoke of in other blogs where we learned of the Stem Cell Therapy we had done for Cayman at Duke University. Cayman has made her mark of fame along with the other babies that have had this infusion for hydrocephalus on Owen's website. Check it out here. Cayman also contributed by helping others understand about G-tubes on this part of the website. Owen's progress is inspiring. Many of the other hydro mom's have blogs too. If Cayman is right next to me I usually read her all the updates about her friends as well as every comment that people write on her blog. I wheel the bassinet next to me at the computer and she lays there staring at the screen. She is very attracted to anything with bright colors that lights up. The computer or TV screen will grab her attention and hold it longer than anything else. If I ever forget to read her the updates when we're at the computer she informs me. I'm not sure if it was a coincidental moment, I like to believe it wasn't, but she made her little baby squeal noise to get my attention. I started reading out loud to her then and she was perfectly content.

Picture Blog

Today's Picture Story....


It's been so hot...but it's been great! Cayman has mostly laid around in just her diaper and she loves it! The tricky part has been trying to figure out how to keep her from grabbing at her G-tube.



Here she is airing out her sweaty armpits.



It was a nice warm, calm summer evening (ok, so I know it's technically not summer yet, but it's close). We took Cayman for a walk. When we went to her Neurosurgeon appointment on Tuesday we noticed Cayman staring out the window of the van watching everything go by. She's never done that before. We thought a walk with her would be great so she could see everything in a slower pace. But she didn't really spend much time looking around. Maybe she prefers the faster pace of life. Ha, I guess so far that's all she has ever known...the go-go-go. Perhaps that's why.


Mommy and Daddy have found their social lives again. Our friends Nick and Val were over the other evening. It was fun to spend some time with them. They are expecting their first baby right now! How exciting! I didn't get any pictures of us all together, but here is what we did that evening. :o)

Our other friends, Nate and Amy, came by to meet Cayman. It's been a whole year since we've seen them!!! That's so hard to believe! I use to see them everyday. Nate and I went to high school together, and Amy and I attended the same church. Life sure is changing all the time!

Speaking of changes...we heard from our realtor. There's a strong possibility that we are closing on our house this coming Tuesday!! We verbally accepted a lease on an apartment. Next week at this time we could be moved into our new place! Wow, my mind does not know how to wrap around how quickly all this is going to take place. Thank God Cayman does not have any appointments next. We pray that no surprises come up so our schedule stays clear as we figure out how to move all our stuff from two locations into one location. To my local blog readers...we are in need of a washing machine. Do you know of one in good working condition that is for sale affordable to a tight budget?

And here's a couple pictures that are too cute for me to keep to myself.

Daddy and Cayman playing with Mommy's new labtop. It came just in time as my desktop is on it's way out. I may turn into a blogging maniac now...more than I have already...now that my computer and I are mobile! :o) My favorite part about my new computer is that it's green and it works!


Lots of smiles for Grandma Sue!



Sitting up like a big girl!

Calling For a Schedule

Cayman's one night stretch of sleeping through the night a couple blogs ago has not continued. She still is eating every 4 hours, but she's a lot faster at it. She seems to be outgrowing her colic-gas stage and so she's a lot less fussy now too. All this makes getting up with her in the night a lot easier. Before, if I was solo on waking up with her it would take me up to 2 hours at a time: feeding her, burping, then calming her fussiness back to sleep, and then pumping. We've upgraded her to the next level of nipple flow, so she's eating faster without drowning in it, and she goes right to sleep when she's done eating. Then all I have to do is pump, and half an hour later I'm back in bed. All this taking only about one hour for me! I feel much more rested than what I did before. Cayman and I have been working hard on having a more structured schedule of awake and sleep times. It gets a little difficult during the week when Daddy is off work because he leans towards his nocturnal weekend schedule. But there's times when Cayman and I have to go to bed and get up without him. We don't like doing that because we love doing everything with Daddy! But this seems to be making things run smoother around here. And smoother means a less cranky mother/wife, or in Mike's words "she's less nagging" :o).

Neurosurgeon Appointment Today

Cayman doesn't need a shunt revision yet. The shunt is still not working properly though. It's working just enough to keep the fluid draining at a very low rate without excess build up occurring. Dr. Maher looked at the back of Cayman's eyes to view the pressure on her brain. He said that if there was pressure you can see a dilation of the optic nerve. Everything looked OK there. So he sees no reasons to take her to surgery yet. So we'll just keep waiting it out.

Play Time

Cayman played under her floor gym today and was smiling, kicking her feet, and making noises at the dangling animals. It's as if she was discovering them for the first time. She's been really interactive and that is fun to see! Just yesterday she started a new thing. I was playing with her on the floor and my phone rang. When I walked away from her to answer it she started making baby noises. As soon as I turned back around she started smiling and kicking her feet. I decided to test this and see if she'd do it again. She kept it up for several minutes. I am thrilled to see her learning how to use her "voice" beyond crying, and showing social desires. Mike and I have never known what we could expect with Cayman's development. We feared our baby would be more like a vegetable than a human being. I am so amazed by her and how well she's doing!