Home from the Hospital

I'm not sure why we didn't get to go home yesterday. We never heard from the doctor the whole day. But it turned out to be a good thing though because by this morning Cayman's head had already started to cave in. So her shunt setting was changed to slow up the drainage. I was nervous that this wouldn't work and we'd be right where we were before when she was over draining and facing another surgery to correct it. But so far it seems her head is responding to the adjusted setting. We're so glad for that!! We see the Neurosurgeon on Friday.

Cayman finally got her button G-tube put in. Poor thing cried through the whole experience! She cried more frequently after that all afternoon. That is very unlike her. She only cries when she's hungry. If anything is wrong normally it's just a fussiness, not really a cry. But she really cried and we coudn't get her to stop at times. I have to admit I was very nervous leaving the hospital with her like this but she got better about an hour before we left. And she slept most of the way home. We think it's just her adjusting to the new G-tube. The balloon on the end of the button is larger than what she had with her last G-tube so her tummy might feel a little irritated until it gets use to it. She already seems better tonight. The picture on the right shows the button. The balloon is the part that goes inside her stomach.

Cayman's hospital room in the Moderate Care was a large room with 3 beds in it. Most of the time her other roomies were two other baby boys. The one boy (Lucas) had been in the hospital for 3 months. His family is staying at the Ronald McDonald house and they recognized us this time from last time. They are from Toledo, OH so it was fun making that connection since we live close to there. The other little boy (Hudson) came in as a 2 day old with a heart defect. He'll be having surgery tomorrow.

Here's Cayman taking a nap before she was discharged.

She was wide awake ready to say "hi" to Grandma Sue when we got home. Grandma Sue was ready and waiting at the door!

Going Home

Wednesday April 30, 2008

I'll write more later about all that has taken place yesterday and today, but it looks like we're going home today!! YAY!!!

To Go Home or Not To Go Home?

So we're just waiting around to hear from the Neurosurgeon and his decision about us going home. He is out of town right now. He left yesterday afternoon. If we would have waited to bring Cayman to the hospital Monday morning instead of in the middle of the night he would not have been around to do her surgery. Which we've been told a Shunt Revision is a pretty straight forward procedure, not too complex, so another Neurosurgeon would have been able to do it just fine. But we like having our doctor do it because we know him and he knows Cayman the best. So we're glad it worked out that he could do her shunt revision before he left town. I'm not sure why it's taking so long to hear what his decision is. Waiting sucks!

Yesterday evening we went to the Ronald McDonald House, checked in, and then took a nap. When we woke up we went back to the hospital to be with Cayman. She was wide awake. She looked so good! She even gave us a few smiles. She still had her nasal cannula on, and she just seemed so uncomfortable with it especially since she still has her stuffy nose. The nice part about being at the hospital is the nurse can take out their awesome sucker and get all that snot out! Mike asked the nurse if she could remove the cannula since Cayman's oxygen levels were great during a time when the cannula had fallen off accidentally for awhile. The nurse said the doctor hadn't ordered for it to come off yet. Mike's response was "As her parents, can we order for it to come off?" :o) So the nurse removed the tape and took the cannula off. Cayman gave her a big smile once it was off! It was so cute! She was a much happier baby without the cannula taped to her face.

Cayman was so hard to leave last night that we ended up staying with her until 3 a.m. Then about mid-morning today we received a phone call from Cayman's nurse. She said it had been about 4 1/2 hours since Cayman's last feeding and she couldn't get her to eat again. We told her that at times that is typical and just let her sleep for a little bit more and soon she'd wake up hungry. An hour later the nurse called back sounding a little stressed because she still couldn't get Cayman to eat and she asked for some "Parental Help". Mike and I were about to leave for the hospital anyways so we headed out right away. When we got there, Cayman was still sleeping. We talked to her for a little bit and she woke up. I gave her the bottle and she sucked it right down. She was just being ornary for the nurse...I would rebel too if I had to be in this place again.

By the way, Grandma Sue made it home just fine yesterday evening after being awake for a day and half. She got some good sleep last night!

Out of Surgery

Cayman's shunt revision went well. Once inside, Dr. Maher discovered that Cayman's shunt was plugged the whole way through. He had to replace the catheter that goes into her brain and the valve. The rest of the tube that goes into her heart he was able to flush it to get it unclogged so therefore that part didn't need to be replaced. He said that some babies are more prone to protein build-up in a shunt and Cayman must be one of them. It could increase her chances of this happening again. They had some trouble extubating (removing her breathing tube) after surgery. Her oxygen levels dropped low and they had to give her medicine to help get those numbers stable. Pastor Dave traveled up to see us. That was nice!! He got there while we were waiting to hear word that we could see Cayman.

The doctor thought there could be a good chance Cayman can go home tomorrow. That would be nice. We are staying at the Ronald McDonald house. It was totally a God-thing that a room was available for us since this place is so difficult to get into.

Dr. Lindsey (one of Cayman's Neonatal doctors from the NICU) happened to see Cayman's name on the admittance list and stopped in to say hi. She was happy to see Cayman yet so sad to see her back in the hospital.

Grandma Sue is on her way back home right now. She's been awake for a day and a half so I pray she does alright making the long trip back.

Cayman before her shunt revision. I love her little feet hanging out from the gown.

Grandma Sue and Cayman snuggling before surgeryI don't think we look too bad for being up all night and all day.Here I am taking Cayman to the O.R. Seriously, I was not as happy as I look. I was fighting the tears.

Shunt Revision

Monday April 28, 2008

Cayman's in surgery right now. Grandma Sue and I arrived at the U of M E.R. last night around 4 a.m. Cayman did not ride well. She has been so fussy. It was the longest 2 hour trip with her! She had x-rays done to look at the placement of her shunt as well as a CT scan. The on-call Neurosurgeon dialed her shunt setting down to the lowest (0.5) to see if the fluid would start draining. This Neurosurgeon seemed to think it wasn't a shunt failure. So we were starting to feel better, but after she was admitted into the hospital and Cayman's Neurosurgeon arrived around 7 a.m. he felt it was likely a shunt failure and would need to take her to surgery. First he wanted to wait a couple hours to make sure there was no change. So around 9 a.m. he came back up and evaluated the situation. There was no change in her head pressure. So Cayman is having a shunt revision. Typically this is a simple procedure and the patient gets to go home the next day. However, the doctor wants to keep Cayman for a few days because of her history of over draining. We asked lots of questions about, once a working shunt is back in her will her head go back to decompressing and the bones overriding. Very likely this is what could happen again. And then we'd be looking at another surgery to put in the second valve to regulate the flow. So right now we are trying to focus on getting her a shunt that works and then go from there. Mike and I aren't sure where we're going to stay tonight yet. We are so very tired and worried about our little girl. Mike worked last night and came straight up to Ann Arbor when he got off, and I didn't get any sleep last night nor did Grandma Sue. I'm so glad we brought Cayman to the hospital though. Her head is now measuring 47 cm...only 1 cm smaller than it was at birth, and she weighed in at 8 lb 13 oz. Last week she weighed just 8 lbs. All the extra fluid in her head is contributing to these bigger numbers. We're so ready to get our baby girl back to feeling well and take her home again!!

The symptoms that concerned us about Cayman were:

• extra sleepiness
• irritable
• sunsetting eyes (roll downward)
• soft spot bulging
• increased head circumference
• vomitting
• swelling around the valve of the shunt

Off to the Hospital

Grandma Sue and I are taking Cayman to the U of M E.R tonight. The doctor wants to see her tonight and not wait til the morning regarding her shunt. I'll try to keep everyone posted.

Big Head again

It looks like we might be making another unplanned trip to Ann Arbor tomorrow. Cayman's head has grown almost a whole centimeter since Friday! I'm not sure if this means the shunt is plugged or not. Her head is almost back to the size it was when she was born!! Also, there is some puffiness around the shunt valve. The doctor wasn't concerned about it on Friday. He said it could just be some Cerebrospinal Fluid leaking out around it and that happens. I guess at this point everything is concerning me!! Cayman was smiling for Daddy and me today but at times she's either very fussy when she is awake or sleeping a lot, unable to stir her even past feeding time. It's difficult to know if this is just typical baby behavior or if it's because of the fluid increasing in her head. Yesterday she was not like that so again it's tough to know if it's something serious or not. Her eyes are back to doing the sunsetting (rolling downwards) thing a lot more, so I believe a lot of this is because of the increase in her head pressure. Daddy and I hate the thought of checking her back into the hospital. Maybe that won't have to happen. We already know she is going to need her shunt redone around 6 months of age. Her shunt empties the fluid into her heart. Typically a shunt is placed in the abdomen. Somewhere around 6 months she will have the shunt taken out of her heart and put in her abdomen. We know this shunt revision is going to happen and we've accepted it because we have to. In my mind there is this "check-off list" of all the procedures she needs to have done. It feels relieving to "check" one off and then move forward. I feel very uncomfortable with the thought of my "check-off list" growing.

Visitors

Saturday April 26, 2008


Cayman had visitors today:

• Great Aunt Linda
• Great Uncle Martin
• and 2nd cousins- Ben & Laura

Here's Aunt Linda holding Cayman

They came and brought Cayman gifts. She got lots of diapers, books, blankets, OSU outfits, and a BeBe Pod. Oh yes, and a huge stuffed pink bunny!!

Neurosurgeon Appointment...again

I took Cayman to Ann Arbor yesterday for another unplanned appointment with her Neurosurgeon. Mike and I had measured her head and it had grown bigger and the gaps between her skull bones are further apart. We emailed Dr. Maher some pictures and asked him if he thought we should make the trip up there before her next appointment, which is thursday May 1st. He thought it was best for him to see her sooner. Daddy had to go to work, so Grandma Cindy and Aunt Madison came to Ann Arbor with me. It was the first time we've went without Daddy. It was sad. We missed him. Dr. Maher ordered for an ultrasound to be done on Cayman's head. It looked the same as from the last ultrasound that was done March 20th (a week before Cayman came home from the hospital). Dr. Maher measured her head. It was 46 cm. She was born with it at 48 cm, so it's not far off from where it was. The doctor adjusted the shunt setting (down to 1.0 now). One of two things is going on he said. Either the body and shunt are still adjusting to each other or the shunt is plugged. He said that protein in the Cerebrospinal Fluid sometimes can plug a shunt. If that is the case she'll have to have surgery to replace the shunt. As the doctor keeps turning the valve setting down and we don't see extra fluid draining then we can know that it is plugged. You know those moments where you want to take a pillow and scream as loud as you can into it? That's what I feel like doing. First it was draining too much, so we prayed it would correct itself so she could avoid surgery. Now it's not draining enough, and we're praying it will pick up so again we can avoid surgery. Talk about a yo-yo effect!! But once again, Dr. Maher is staying positive. He thinks we'll see it drain more again on its own and the right valve setting will be found that will regulate Cayman's head drainage so it's stable and not all over.

Grandma Cindy and Aunt Madison stayed the night with me while Daddy was at work. Every night Cayman seems to have an awake, fussy time that is usually between 2 a.m.-4 a.m. I was very tired so Mom got up and sat with Cayman so I could get some sleep. When I woke up this is how I found them:

More Random Ramblings

Yesterday was such a beautiful day outside here! Almost 80 degrees, sunny, bright blue sky with white puffy clouds. It was just perfect!! We had to go outside with Cayman to enjoy it. And Grandma Jeanne if you are reading, we did put a hat on her to protect her from the wind and any air that could be still chilly. Mike and I took a short walk with Cayman. It was wonderful!!

When Cayman was in the hospital, I remember writing how I longed to be at home with her and Mike, relaxing on our couch, cuddled up watching TV. We finally did that together last night!! We rented some movies. Getting ready for a movie night is so different with a baby. Mike got the popcorn ready and something for us to drink. He took that downstairs and stuck the movie in. I was on the couch holding Cayman. Then she started crying. She wanted some food. So Mike got a bottle ready for her. I started feeding her, then we remembered we forgot to put her medicine in it. While Mike was doing that she pooped her pants and then was all fussy wanting them changed. So I changed her. Then she was crying because she wanted her bottle. By then Mike was done putting her medicine in the milk so I started feeding her again. Finally, we were ready to start the movie! We laughed as we thought about the difference between our movies nights before and after we had a baby! It was so much fun to have our first family movie night!!

Cayman went to her first restaurant today. It was Mom's Diner. It's a local restaurant that is a remake of the 1960's burger, french fries, pizza, soda and ice cream shop with mini juke boxes at each booth so you can play your favorite oldies. Mike said I made it sound cooler than it actually is. I'm guessing if you're not originally from here you would fall in love with this place, but having been born and raised here a place loses its luster from over-exsposure. We met Grandma Cindy, Aunt Madison, Aunt Stacey, and Uncle Dan there for supper.

Cayman was smiling big for Grandma Sue and I a lot this evening. However, whenever we'd pull the camera out the smiles would disappear. It happened everytime. It's like she was doing it on purpose to annoy us! This is the best of it we could capture.

Here's a couple more pictures from tonight

Now and Then

I was cleaning out today. I came across a journal I had kept during the beginning part of my pregnancy. It was before my 20 week ultrasound when my baby was diagnosed with Congenital Hydrocephalus. How strange it was to read my own thoughts from back then. How different they were then compared to the 2nd half of my pregnancy. It felt like I was reading someone else's journal, like it was a different time, or a different situation. I stopped journaling after that ultrasound. I wish I would have kept it up. I'm not exactly sure what I would have written. It's been hard for me to know how to put all my feelings into words, which has been one of the main motivations for creating Cayman's blog. I find it healing when I can figure out how to express myself. Otherwise if I can't put my feelings in some form of words that make sense, then everything just stays bottled up and I become emotionless so I can feel less. I don't like who I am when I do that. That's why you'll find me talking in circles sometimes trying to figure out what I'm feeling because once I can know, usually I can find a direction of where to go from there.

I can remember the complete devastation I felt when the doctor broke the news to us that day in his office. I quit listening to his report just so I could concentrate on controlling my tears. I knew if I kept listening I would cry so hard I would not be able to breathe or talk...and those are the kind of cries you want to do only at home, not in a doctor's office. I remember wishing there was a way out to the parking lot without having to pass through the busy waiting area full of other pregnant women. I wonder what the other women thought when they saw Mike and I leaving that day with so many tears on our faces. I know what they felt. I use to have those same thoughts before my baby's diagnosis. You can't say you know what the pain feels like, but you can totally identify how dreadful it is. I know I would have never been able to journal the pain I felt then. There were no words, nothing that could describe what we felt. The pain now is not the same as it was then. I think having Cayman tangible makes that difference. There is still pain but it's different than it was. And maybe it's not the pain that is different as much as my need and desire to hold my baby close can and is being fulfilled. So I have some joy along with the pain, making it more bearable. There was so much unknown and there actually still is but it seems less scary. I didn't say not scary at all, just less. Which is huge because it makes this situation more doable. Before I didn't know how I was going to handle this. Mike and I have agreed we don't know how we are handling it. You just do what you have to do when you have to do it.

But see this little face? She makes it doable for us...a lot easier...completely worth it!!

A Smile That Can Melt Your Heart

My baby just smiled at me!!! She has smiled a few times over the last week or so, but it was hard to say if it was a social smile or just gas. But there is no doubt my baby voluntarily smiled at me!! She was fussing in her bassinet because of that stupid flem she has right now. I picked her up and snuggled her against me like I always do. She looked straight up at me. I smiled and said to her "My baby", which is what I said to her a lot when she was in the NICU. I would sit next to her bed, hold her hand, and say over and over in a soft sweet tone "my baby". I was so thrilled when I saw her smile, I said it again "My baby" and she smiled again. If she had teeth it would have been a big toothy smile! What a gift she just gave me. I wish I could have gotten a picture of it!!

The first time we saw Cayman smile was actually on ultrasound. It's not a very good picture because she was moving around a lot and that created smudgy shadows on her and by the time they froze the screen her smile had faded to more of a grin. We cherish that we have a picture from that!!!

Doctor Appointments

Monday April 21, 2008

Mike worked last night, came home, got less than 2 hours of sleep, and off to Ann Arbor we went for two doctor appointments, and he never complained once. What a good Husband/Daddy he is:

Neurosurgeon:
Yeah, I know, Cayman just saw the Neurosurgeon. This was an unscheduled trip to his office. Her head had grown a whole centimeter since Thursday (it's now 44.5 cm)and we were worried that next week would be too late to see the doctor again and since we were going there today anyways, Dr. Maher fit us into his busy schedule to see Cayman. Her scalp veins were starting to pop out from the head pressure. Crazy fluid. One week it's not enough fluid, and the next it's too much! The doctor adjusted the shunt valve setting so it is slightly draining the fluid a little bit more. It was at 2.5 and now it is at 2. I say that not because it really means anything to everyone, but more for my records since Cayman's blogs serves as our own personal document of everything.

Pediatric Surgeon:
Her stomach incision has healed beautifully. The doctor was very pleased to hear she's eating everything orally and we never use the G-tube to feed her. In fact, the last few days we have not been venting her so she can learn and adjust to burping through her mouth instead of the tube. That's been going pretty good actually. She has spit up a few times but I'm not really sure if that is because of this change. She has been having a runny nose that drains down her throat and she gags on it, then that makes her spit up. The doctor was going to put a button G-tube in. We were so excited about this. A button will sit flush to her skin instead of having this long tube extending from her body that we have to be so careful it does not get caught on anything. However, they were all out of the button tubes. So the next time we are back up there for another doctor appointment (which is next week) we are to call and see if they have any buttons in stock and if they do we can swing by the office and they'll put it in. She weighed in at 8 pounds exactly. We were so excited to hear this high of weight and then were shocked to find out the doctor said her weight was down since she weighed on April 17th. April 17th was when Cayman was at the Pediatrician's last week. Mike and I were there and saw the scales say 7 lb 10.5 oz. There's gotta be some sort of miscommunication going on.

Random thoughts:

• Cayman has now been home more days than she spent in the hospital
  
• Mike was feeding Cayman in one of the sitting/lobby areas at the hospital and a little girl walked by and asked her mom "Why is he feeding a doll?"
  
• My breast pump died today. Thank God I have a ton of extra milk in the freezer. Hopefully we get this one fixed or a new one before my milk supply diminishes.
  
• My desktop computer is about to die...I seem to not be having very good luck with my stuff lately. I would like to get a laptop to replace it before my desktop dies on me completely. So we went to Sam's Club after Cayman's appointments to look at their stock of laptops. I went by the clothes section and there was a woman working, tiding up the space. She turned around and sneezed right next to Cayman in her stroller. I didn't' say anything but I'm guessing the look of panic on my face sent this woman into a continuous rave of apologies. I am not sure if this woman was sick or not. I'm just praying no harm comes to Cayman from that. That there is the reason why we haven't taken her out but only for her doctors appointments!
  
• Now that Cayman is adjusted to being home from the hospital we have been trying to play and stimulate her more. Before, we kept things as low key as possible so she could rest, adjust, and heal. The Occupational Therapist said it would be good to put toys in her hand so she can work mostly her left thumb that always stays tucked tightly into her palm. So here's Cayman playing with some of her toys. She looks so thrilled, doesn't she? :o)
• Today has been one of those harder emotional days for me. It must be from the lack of sleep over the weekend because we haven't received any bad news lately. Every now and then I think about the genetic test that we are waiting to come back from Duke. I say a quick pray and then try to push it out of my mind because if I don't I'll just sit and cry for an hour! Yesterday I got out a new outfit for Cayman to wear that I had bought her while I was pregnant. She's finally fitting into Newborn size and that is what this outfit is. But I sadly discovered the shirt opening was not large enough to fit over her head. I cried! That's how I can tell I need sleep when I don't even deal with the smaller things very well. Everything suddenly seems like a reminder of how hard everything has been. But that's when I pick up Cayman and I just look at that beautiful baby, and even though the pain is still in my heart, a smile comes to my face and I feel so blessed to have her. I told her "It's ok your noggin is big. I love you just the way you are!"
• Tomorrow Cayman has an appointment with a Homeopathic Practitioner. He'll address Cayman's nutritional needs and cellular deficiencies.

Cayman's Hair

When Cayman was born with so much hair we wondered if it would fall out like some babies' hair does. Not only did it not fall out, it's growing!! Well I should say it's growing in the back. It's so funny...when she wakes up she has bed head.

Also when she was born her eyelashes and eyebrows were so light it looked liked she did not have any. Her eyelashes have now darkened and lengthened. I think they are so pretty!!

Some Of Our Favorite Items

Travel

Baby In Sight Mega Mirror

Before we bought this mirror I was always in the back of the van with Cayman or if I sat in the front I had to lean my seat back so I could check on her. Now even Daddy can view her in the rear view mirror when he's driving.

Automobile Bottle Warmer

Sometimes when we are on the go I am not always able to pump right at her feeding time so we always take extra bottles in an insulted lunch bag packed with ice. So this travel bottle warmer is so helpful. It plugs right into the cigarette lighter. It's small so it fits easily in the glove box or side door.

Quick Clean Breastpump Wipes

These are awesome. No longer do I have to figure out how to clean my phalanges when we're traveling.

Thank you Michelle for suggesting them to me.

Dirty Diaper Waste Bags

Sometimes there isn't always a place to throw away a messy diaper, so these bags are helpful especially when it's a stinky diaper. The bags are even scented to mask the smell. We always keep them in the diaper bag.

Portable Changing Station

It's perfect for laying it down on a changing table in a public restroom or a bench or wherever. We don't trust those places are clean enough to lay Cayman down on. So this thing is perfect. It holds diapers, wipes, and her butt cream. It folds up and we keep it in the diaper bag. It does take up quite a bit of room in the bag but it's so worth it to have it along.

Car Seat Undermat

This mat protects our leather seats from getting those indents from the car seat. It also has pockets that hang in front of the seat to provide extra storage. I love extra storage. It feeds my urge for organization.

Playtex VentAire Advanced Bottles

The bent neck bottles are perfect for when we have to feed Cayman in the vehicle. When she's in the car seat, a regular bottle smashes her nose when we tip it up as it gets down to the end. So this bent neck helps take care of that problem. We bought the VentAire Advanced kind. They are suppose to reduce gas, spit-up, and colic. They are very worth the little bit extra money they cost. Whenever Cayman feeds out of them she has very few burps.

We're so glad to have our van, especially after our big trip to North Carolina. Babies need so much stuff and we would have never been able to fit it all in a car.

JJ Cole Pacifier Pod

It has an "attach-anywhere" velcro handle. We always keep it attached to the outside of the diaper bag so it's easy to find Cayman's pacifier.

Portable Size Hand Sanitizer

We attach these to the outside of the diaper bag too. Daddy and Mommy are total germaphobes so these are great for those times when we can't get somewhere to wash our hands.

Graco Travel System

We knew we would be returning to Ann Arbor for a lot of doctor appointments. So we bought this kind of system where the car seat snaps onto the stroller which is perfect since the trek from the parking garage to the doctor's office can be long. During the time when we needed to hold Cayman's head downward to slow down the drainage from her head we took her out of the car seat and laid her in the stroller since it reclines to a lay-down position. We also like all the cubbies the stroller had for storage!

At Home

JJ Cole Diaper & Wipes Caddy

Because we're short on space and don't have room for a changing table this is so ideal because we have everything we need for Cayman's diaper changing times stored in this caddy. It doesn't take up much room and we can take it between upstairs and downstairs very easily and convienently. I love the extra little drawer it has. We keep a pacifier, thermometer, q-tips, or whatever else we might need when we go upstairs so we don't have to keep running back downstairs for stuff.

Bebesounds NasalClear Nasal Aspirator

We never seem to be able to get much out of her nose with those bulb suckers. This nasal aspirator works much better! At times when Cayman is fussy because of her stuffy nose, we'll suck it, and then she's comfortable and goes right to sleep.

Pampers Swaddlers

We've tried different diaper brands and these are our favorite

Big Prayers Needed

I'm going to make this brief because I don't like thinking about it. But it's so HUGE that I can't leave it unspoken because I believe in the power of prayer...and a lot in specific prayer!!

One of my post from when we were at Duke I meantioned that Dr. Kurtzberg had some blood drawn on Cayman to test for a specific gene disorder she thinks Cayman could possibly have. The name of this disorder is Fanconi Anemia. It's a rare inherited disease that can lead to bone marrow failure or other cancers. Fanconi anemia may be associated with heart, kidney, and/or skeletal malformations. Which I think might be what tripped Dr. Kurtzberg since Cayman has all three of these issues.

It takes 3 weeks for the test results to come back. Oh how badly I want them to be negative. My worse fear has always been that they would find something that would only lead to more health issues throughout her life and eventually would be fatal. I don't want to live my worse fear. Please pray!!

1 month old

Back Home in Ohio!

We made it back home this evening around 7 p.m. with our day starting at 7:30 a.m. I'm so glad to be out of the van! It's been such a long trip! Cayman has traveled over 1500 miles over the last week. I am still amazed and so thankful at how well she traveled. She cried very little. Once in awhile she would complain but soon would settle down and seemed content.

Pediatrician appointment:
Duke had given us Cayman's blood work lab results to take to the doctor. There were a few numbers they wanted the doctor to be aware of. Her bilirubin is higher than it was (jaundice), her protein is low, and her hemoglobin is low (anemic). The doctor wants another set of labs taken within this next week and for Cayman to see a nutritionalist. GESH she has enough appointments and people she has to see!!! Plus she has been stuck with too many needles as it is! But I understand these things are important to stay on top of for her health. So we're taking her to a Homeopathic Practitioner that I highly trust and we were planning on taking her there anyways. So we'll do that next week. Other than that, Cayman is gaining weight nicely and everything else looks great.

Neurosurgeon appointment:
He was very pleased at the way Cayman's head looks. It measured 43.5 cm. Last week it was 41 cm. So it's come back up some. Numbers in Hydrocephalus have me all messed up. Since 20 weeks pregnant we watched her head grow to an unhealthy circumference. So it's been encouraging and relieving to see the number get lower over the last month than higher. And now we're back to having the number get higher...yet this time it's a good thing. Talk about seeming messed up!! Other moms with a Hydrocephalus baby I'm sure can understand the obsession over measuring your baby's head. Over the last couple days when I would measure Cayman's head and it was growing I freaked! Yet this is what the doctor told us he wanted to see, but it's so hard to feel comfortable with an increasing number when before an increasing number was always bad news. So I've gotta quit obsessing over the number and just go off of what the doctor says is good and bad. So Cayman is doing good. Dr. Maher is no longer talking about taking her back to surgery soon. If there is any changes he'll make it's more likely in the shunt setting to increase the fluid drainage.

Here's the difference in Cayman's head. The pictures on the left were taken April 6th and the ones on the right is today, April 17th.





































Right now our lives consist of GO-GO-GO. I rarely stop long enough to realize how tired I am. Usually I can tell on the days when I can't seem to bring myself to a single positive thought. I'll just sit and hold Cayman and cry sometimes...praying the whole time she does not realize my pain I feel from watching her suffer from her anomalies. Mike made a good point today when he said "Let's not let Cayman's issues stress us out so much that we miss out on enjoying her to the fullest at this age she is." So true, and that is what I want too! But I can't when it seems like all we do is live out of doctor offices. So this is our plan: we are going to take a serious look at Cayman's calendar and rule out all the appointments that are not so crucial to her right now. I don't know if that'll work out or not, but right now it's so hard to live more on the positive side when every week Cayman is at some different doctor getting poked at, more evaluations, and more opinions that put such fear in us for Cayman's future.

On the Road Again

Wednesday April 16, 2008

We didn't leave Durham, NC as early as we wanted to. Had we left "on time" we would have stopped by to see my Aunt Janet that lives only about an hour from Durham. We traveled all the way to Marion, OH...so that was around 9 hours on the road, including our rest stops.

It was time for Cayman to eat when we reached Columbus, OH so we stopped in to visit Mike's sister, Sam for a short break from traveling. Cayman liked visiting her Aunt Sam (on the left) and she got to meet Sam's roommate, Jordan (on the right).

Tomorrow we'll travel to Maumee, OH (about 1 1/2 hours away from Marion, OH) for Cayman's peditrician appointment, and then from there travel to Ann Arbor (an hour trip from Maumee), for her Neurosurgeon appointment. Then we get to travel back home, which is 2 hours from Ann Arbor. So Cayman will have been in 5 different states within 2 days! We long for a break from doctor appointments and just be at home with her. We don't get that break next week though. She has at least 2 more appointments next week that I can think of without even looking at the calendar.

Cayman has traveled very well! The only times she was fussy was in the Virginia's when the altitude kept changing as we traveled through the mountains. Our ears were popping so I'm sure hers were feeling weird too.