Cayman's head is starting to drastically sink in again! WHY? Why is it sinking?! We haven't done anything different with her in the last week!! I emailed pictures to her Neurosurgeon and called his office. I'm guessing we'll be taking her up to Ann Arbor tomorrow to get the shunt setting changed. We were so excited that this whole week we didn't have any appointments we had to drag ourselves and Cayman to. Why can't something continuously go smooth for awhile. And I know that's not true. Because there are a lot of things that are going smoothly and have been, like Cayman eating and not needing her G-tube. When I get this tired and frustrated my mind focuses on the the areas that I want to be different. I told God that I don't even ask for things to be easy...just normal difficult! Right now I am so frustrated and burned out from worrying so much about Cayman's health. If the shunt continues to over drain her head fluid then we're looking at another surgery for her! I just want to be at home with my baby and my husband. I enjoy my life at home! I feel like there's someone or something against me, that doesn't want me to be at home happy. Obviously I'm having a bad day and am in need of extra encouragement...or maybe just a good nap! Any of that could help!
Welcome to Motherhood
Tuesday, May 6, 2008
So here's how I know I've entered motherhood:
- When I hear the dryer ding only a few minutes after starting it and my mother-in-law goes to check on it for me and discovers I forgot to put the clothes from the washer into it.
- I take Cayman to her doctor's appointment and discover I put makeup on only one eye.
- I can't find my cell phone, so I ask Mike to call it, and I run around the room madly, following the sound until I locate the phone under a pile of unsorted mail.
- I spend the entire week in sweats.
- I look forward to getting out of the house with Cayman, and then can't wait to return home because I'm exhausted from hauling her, the diaper bag, my purse, the car seat, and the stroller.
- I've caught spit-up in my hands.
- I call my mom everytime Cayman does something really cute.
- It's the middle of the day and I start to not feel well and I suddenly realize I have forgotten to eat all day.
- My idea of a good day is making it through without Cayman leaking any bodily fluids on me.
- My idea of a good night is getting 3 uninterrupted hours of sleep
- I have to change my shirt mutliple times in a day
- I'm up each night late wiping, washing, drying, loading, unloading, flushing, sweeping, pumping, picking up, changing sheets, changing diapers, bathing, paying bills, budgeting, clipping coupons, folding clothes, putting to bed, dragging out of bed, rocking, brushing, feeding, swinging, and cuddling.
- One little smile from my girl sends me dancing around the room
Yep, motherhood is everything and more that I hoped it would be! I'm loving it!! This feels like what I was made for.



Posted by Kristen at 11:41 PM 7 Showin' Comment Love
24 Things About...Me!
My wonderful internet friend Lisa has tagged me. How exciting! It's my first tag :o). So here we go:
4 places I go over and over...
- my mom's house
- Doctor's appointments
- Babies R Us
- Walmart
4 people who e-mail me...
- Mike
- my mom
- Stacey (my sister)
- Sue (my mother-in-law) she sends the funniest forwards, and I don't normally like forwards!
4 of my favorite foods...
- Chipotle
- the Hot N Sour soup from this Chinese Restaurant
- butterfinger blizzards from Dairy Queen
- fresh fruit - pineapple, apples, banans, cherries, grapes...you get the idea
4 places I would rather be right now...
- Hawaii
- in bed sleeping
- the dunes - this is where we moved from in December
- in a house with more space
4 movies I could watch over and over...
- 13 Going On 30
- Pirates of the Carribbean (only the 1st one)
- Napoleon Dynamite (don't ask me why...I'm aware it's a dumb movie)
- Ratatouille
4 people who I think will respond...this means I tag you...
Posted by Kristen at 12:45 AM 1 Showin' Comment Love
Cayman's first bath
Up until today Cayman has only had sponge baths. Today was the first at dipping her into a tub. She started out good...no cries or fussiness. Just wiggled around a little and made a few faces when a new part of her body got covered with water. Then the water works came because she was hungry. We took her head bandage off that was from her surgery a week ago. Because her hair has grown longer since birth, the doctor did have to shave that part of her head where the shunt is.I love this picture of Cayman looking at her Daddy. Her eyes are doing so much better since her shunt revision. Only once in awhile they will sunset (roll downward).
Posted by Kristen at 12:17 AM 7 Showin' Comment Love
Neurosurgeon was Happy
Friday, May 2, 2008
Cayman had a follow up visit with her Neurosurgeon today. He was very pleased how the shunt is working. It's not over draining like it did in the past. He kept it at the same setting. Her head measured 45.4 cm, that's almost 2 1/2 cm smaller than it was on Monday before her shunt revision. Cayman was weighed also. I think her weight was 8 lb. 5 oz. The few ounces that she has dropped was from the extra fluid build up in her head. So right now, everything regarding her Hydrocephalus looks good and controlled. From this whole experience the doctor is confident in Mike and I that we are knowledgeable enough to recognize when something is wrong and to contact him. So because he's happy with the way Cayman's head looks right now and Mike and I are responsible enough to keep a close eye on things ourselves we don't have to return to the doctor for another 3 weeks! That was exciting to hear! The less we have to travel back and forth to Ann Arbor feels more relaxing.
Cayman's belly doesn't seem to be doing as well as her head. It's nothing serious...at least I don't think so. She has a lot of gas and seems to be constipated. She has cried a lot, which is very unlike her. In the hospital she was on antibiotics and pain medication so I'm wondering if a side effect to one of those is constipation. So hopefully that can clear up for her. It just breaks my heart watching her cry and cry!
Posted by Kristen at 6:51 PM 4 Showin' Comment Love
Home from the Hospital
Wednesday, April 30, 2008
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.She was wide awake ready to say "hi" to Grandma Sue when we got home. Grandma Sue was ready and waiting at the door!
Posted by Kristen at 10:03 PM 6 Showin' Comment Love
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!!!
Posted by Kristen at 2:19 PM 4 Showin' Comment Love
To Go Home or Not To Go Home?
Tuesday, April 29, 2008
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!
Posted by Kristen at 3:31 PM 6 Showin' Comment Love
Out of Surgery
Monday, April 28, 2008
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.
Posted by Kristen at 5:02 PM 12 Showin' Comment Love
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
Posted by Kristen at 10:44 AM 5 Showin' Comment Love
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.
Posted by Kristen at 1:52 AM 5 Showin' Comment Love
Big Head again
Sunday, April 27, 2008
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.
Posted by Kristen at 3:29 PM 3 Showin' Comment Love
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!!

Posted by Kristen at 12:14 AM 2 Showin' Comment Love
Neurosurgeon Appointment...again
Saturday, April 26, 2008
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.
Posted by Kristen at 10:31 AM 2 Showin' Comment Love
More Random Ramblings
Thursday, April 24, 2008
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!!

Here's a couple more pictures from tonight
Posted by Kristen at 9:50 PM 6 Showin' Comment Love
Now and Then
Wednesday, April 23, 2008
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.
Posted by Kristen at 1:29 PM 9 Showin' Comment Love
A Smile That Can Melt Your Heart
Tuesday, April 22, 2008
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!!!
Posted by Kristen at 1:36 AM 5 Showin' Comment Love
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.
Posted by Kristen at 12:04 AM 1 Showin' Comment Love
Cayman's Hair
Sunday, April 20, 2008
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!!
Posted by Kristen at 12:25 AM 15 Showin' Comment Love
Some Of Our Favorite Items
Friday, April 18, 2008
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.
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.Posted by Kristen at 1:42 PM 3 Showin' Comment Love
















