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!

A Few More Pictures

"Hey I look like Grandpa!" This is how he wears his pants.

Requested Pictures

Someone has put in a request for Cayman pictures. I did not realize it had been awhile since I've posted any pictures!! So here's some from this week.

I'm having some trouble with blogger, so check back later and maybe there will be some more pictures.

Sleep Tight

Saturday May 31, 2008

Cayman slept through the night for the first!!! I had 6 hours straight sleep! I sure hope this is going to be a regular thing, but I'm not going to hold my breath. I've been trying to wake up in the early morning with Cayman and stay up no matter how much sleep I've not gotten. It's been tough but hopefully this is helping her get on a schedule. So during the day I play with her, we listen to children song CD's, watch baby Einstein, read books, bathe her, etc. When she takes one of her afternoon naps I'll try to get one in myself. Trying to do this schedule hasn't been easy because there's time I run on just 2 hours of sleep. But I realize trying to catch up on sleep for myself during the day hours is only encouraging Cayman to continue in her night owl schedule. A little sacrifice now can go a long ways later. So that's what we've been working on and I think we're maybe getting somewhere with it. Grandma Sue's been a big help. There were times she'd watch Cayman in the evening and I would sneak another nap in for myself.

Cayman's head has continuously, slowly decreased in size each day. I am not sure what her head measures today yet. By appearance, I think her head looks slightly bigger today. She was too wiggly to get an accurate measurment though. I thought I would wait later in the morning or day to measure again before I panic.

Going Home

The Neurosurgeon definitely knows everything is not functioning properly with Cayman's shunt. It's been on the lowest setting (0.5) for 2 days now. While we have seen a slight change in her head size (it's now 46 cm) it has not drained drastically like it should on this setting. Since the shunt is not completely plugged the doctor wants to wait on surgically fixing it. He feels safe on waiting because the pressure on her brain has decreased and she's back to her normal self. It's possible that this problem could clear up on its own without surgery and the doctor feels it's worth waiting to see which direction it's going to go. We like that Dr. Maher is not so quick to put Cayman under the knife as that seems to be a typical characteristic of a surgeon. If he can spare Cayman of another surgery he will. He's confident that there is no serious threat to her brain health by waiting since her head pressure has decreased. So we're going home and hopefully not to return until our regular scheduled visit with the doctor next week. We will be phoning in to let the doctor know what we are seeing with Cayman's head whether it's: better, same, or worse. So we'll be doing lots of head circumference measuring over the next few days. If we see the number increasing we'll come back to the hospital right away and it will be Shunt Revision #2 for her.

It was fun to stay at the Ronald McDonald house and have Cayman with us. It was kind of like a little vacation getaway...even though it's not exactly the same as a vacation. Actually it's not like a vacation at all!! It's been a very stressful 2 days constantly wondering, worrying, and waiting. Never mind that idea!!!

Story Time:
At the Ronald McDonald house there are several refrigerators in the kitchen. Every 5 rooms share a fridge. We mark our room number on our food. Mike bought a gallon of milk and cereal for breakfast while we stayed there. After the first day we noticed the milk carton was lower than when we left it. Someone was stealing our milk. So Mike took out the pen and marked "Breast milk" all over the carton. That was enough to scare off our milk thief.

Good News....Bad News

Good News: Cayman is not having surgery today. Her shunt seems to be working. Bad News: It could be partially blocked which could still lead to another shunt revision.

Cayman had a terrible evening yesterday and through the night. She just looked miserable. At 4 a.m. her head was worse. Her soft spot was bulging more and the fluid around her shunt had increased. When we woke up at 7 a.m. the extra fluid around her shunt was gone and her soft spot bulge had gone down some!! This morning her head size had decreased slightly (46.5 cm).

We are so thrilled that our Cayman did not need surgery today! The Neurosurgeon is keeping a close eye on it. He wants to watch for signs of the shunt failing or over drainage if the shunt is completely working. So we're staying another night at the Ronald McDonald house and we'll see him in the morning again.

Cayman is back to her normal self. She's been smiling, "talking", and eating better. Mommy and Daddy are ready for nap time now!!

???Shunt Failure???

Cayman's shunt functionality is not looking good. The Neurosurgeon dialed the valve down to the lowest setting. If the shunt is working this should start to drain the fluid quickly...quickly means seeing a difference within 24 hours. It's been 7 hours so far and there is no positive signs yet that the shunt is working. Cayman has been so sad...crying a lot. She keeps rubbing her eyes with the back of her hand. This is probably because of the extra pressure she feels in her head. So this is the doctor's plan: He changed the shunt setting and we go back to see him tomorrow morning. If there is no signs that the shunt is working then it will be Shunt Revision #2 for her :o(.

A room at the Ronald McDonald house opened up just today so we gratefully slipped into that vacant spot. Cayman is with us. It's nice that the doctor did not admit her to the hospital. Even if Mike and I are up with her every hour we are much more content having her with us.

At this point I've already accepted it that it appears her shunt has failed again! So I'm just ready to get the revision done and over with, and my baby can start to feel good again! Her head is already measuring 47 cm! Her soft spot is bulging, she is very irritable, not eating well, puffiness around the shunt valve, and sleeping a lot. All the same signs she had last time when the shunt failed. Her Neurosurgeon is a very caring man. His thoughts are that the shunt is plugged again but he wants to hold off taking her to surgery just in case it's not plugged and changing the shunt setting works. *sigh* So once again we're back here playing the waiting game and let me tell ya...IT SUCKS!!!

More Outings

On Sunday we went to the nearby Lake for the annual family get together on Grandma Sue's side. This was the first for Cayman to meet these relatives. It was a bit breazy so we kept her wrapped in a blanket with it up around her face to fully protect her and she did not like that so I wasn't able to stay real long with her. But everyone thought she was sweet.

Daddy left for work from the Lake, and Cayman and I went to Grandma Cindy's house. Cayman made another friend, Carla. She came over to meet our little angel. Carla is a good friend of my family's. She was also Mike's day care teacher when he was little. Boy, does she have the stories to tell about Mike! He was much like Denise the Menice when he was a little kid.

I noticed on Saturday Cayman's head looked like it was changing a bit. Then on Sunday it looked bigger. I measured it and found that it was up to 46 cm!! I kept her propped up all night long to help encourage the drainage, but I see this morning it doesn't look any different. She's been extra fussy too and not eating well. All this has me worried that her shunt has failed again. We see the Neurosurgeon on Tuesday. Hopefully we'll find out what's going on.

Tummy Aches...and Smiles

Poor Cayman has not been feeling well. On Wednesday Mike and I left her with Grandma Cindy for most of the day while we went apartment shopping. Cayman did great...much better than Mommy and Daddy. We missed her so much!! When we returned, she was happy, had slept and eaten well the whole day. Then last night around 2 a.m. poor thing fussed off and on til 10 in the morning!! We were suppose to take her to Ann Arbor on Thursday but we canceled her appointments. We figured it was best to just keep her at home. Her head is looking good and has been stable since her last shunt setting adjustment so I felt confident that her checkup could wait until next week. Her other appointment was with Physical Therapy. Her stuffy nose is back and the last time she had that she acted like this. Daddy was up with her from 2 a.m. til 6 a.m. I got up to give Daddy a break.

I had read an article long before I was pregnant that has always stuck with me. It told what to do when your baby is crying and nothing seems to soothe them. It said: Often a baby's cry makes a person nervous. One needs to understand that a cry is the only way a baby can communicate their discomfort. We would verbalize it to each other and even show crabbiness ourselves in our tone and words when we do not feel well. Focus on listening to your baby talk about their discomfort to you instead of trying to get them to stop crying. Do this by snuggling them, even looking into their eyes, and with a soft understanding voice reaffirm their feelings, "I know it hurts, honey. Tell Mama all about it."

I sat in the chair to rock and snuggle Cayman. While I talked to Cayman she would smile in between her cries. She's such an amazing little baby!! Here she is not feeling well, and yet she is still so happy. I'm so proud of my little girl and who she has shown herself to be.

Making More Friends

Cayman made more friends. The Bible Study Aunt Stacey and Uncle Dan attend came over tonight to meet Cayman. They have been faithfully praying for Cayman for a long time!

Starting at the top (left to right): Uncle Dan, Greg, Tracey, Jennifer, Cayman, and Aunt Stacey