Pictures from today

Cayman looked so tiny in the hospital bed. In this photo she was all done receiving her IV fluids and we were just waiting for Dr. Kurtzberg to come in and give us the ok to leave. She did recommend to have some blood drawn on Cayman to test for a specific genetic disorder that she thinks Cayman could possibly have. :o( They tried to get the blood from her IV but it didn't work so they had to prick her again...poor thing. It was a long day for her.
This is how Dr. Kurtzberg bandaged Cayman's IV arm so it was very secure. Her arm was so heavy with gauze, tape, and a splint she barely could move it around. Most of the time she didn't mind though because the Benadryl made her sleepy. A few hours later she woke up crying, demanding to eat NOW!!!

We explored a little of the Duke campus

It seems that all the Duke campus buildings are made of this stone brick. Mike joked that that is why West Virginia is so cut up.
Back at our hotel we took Cayman down to the pool. It was nice and warm in there with the heated pool and the hot tub she was quite comfortable.

Cayman's first dip in a pool. Daddy briefly put Cayman's feet in the water. She did not seem to mind it!

I don't think Cayman liked the noise from the jets of the hot tub. We didn't stay here long.

Infusion Day

Cayman's stem cells are circulating her body! YAY!!! Dr. Kurtzberg put the IV in herself. She didn't get it in the first try because Cayman's arms and legs are so tiny. It took two tries and the IV went in on Cayman's right arm. If Dr. Kurtzberg couldn't get the IV in she asked if she could try on Cayman's head since her scalp veins are bigger. The only objection we had to this was she would have to shave a small portion of her hair. Her head shape already brings enough odd attention to her that we didn't want to add to that...plus bald babies run in our families so we are extra proud of Cayman's full head of hair. So we were very happy Dr. Kurtzberg was able to get the IV in Cayman's arm. She first tried in her left arm...it went in but as soon as she let go of it to tape the IV in place it slipped out of her tiny vein. So once the IV went in on her right arm Dr. Kurtzberg was too afraid to let go of it for fear it would slip out again. So she held the IV in place until all Cayman's medicine and stem cells were administered....which took around 15-20 minutes. Dr. Kurtzberg joked about how such a tiny baby needed so many people to get her infusion done: There was Dr. Kurtzberg who held the IV, June who held Cayman's arm still, and two nurses, one that held her stem cell "IV" bag to drain into her and another nurse who assisted everyone while their hands were tied up in their "job". Cayman cried some. She seemed to hate the rubber band tied around her arm to make her veins pop more than the actual prick from the needle. Her pacifier seemed to soothe her during this time. The medicine that she was given before her stem cell infusion was: Tyenol (this was grape flavored liquid form that Cayman seemed to really enjoying "eating"), Benadryl and Hydrocortisone (to prevent any reactions that aren't likely but are still possible during the infusion). After her infusion she received IV fluids for 4 hours and all her vitals were monitered. So that is the part we are at right now. As things go as anticipated it will be just another hour or two and she'll be discharged and we'll head back to our hotel...probably for a good nap. Then tomorrow morning we just have to phone in and let them know how Cayman is doing. If she's still doing great we can head home. We're hoping to leave early and drive as much of it as we can, stop at a hotel somewhere, and on Thursday drive straight to Ann Arbor for her Neurosurgeon appointment...Cayman's a busy little girl! Her soft spot has raised up more, so hopefully the Neurosurgeon will be pleased about this and we can get further away from the scare of another surgery soon.
Here's Cayman this morning on the way to the hospital for her Stem Cell Infusion.

1 month old pictures

Tuesday April 15, 2008

Mike and I have been wanting to get Cayman's one month old picture taken but it hasn't worked out yet and when we get back to Ohio we aren't sure when it would fit into our schedule. So we went to Picture People this evening and had her pictures taken. It was great! We didn't need an appointment, we just walked in, had them taken, chose the poses we liked (which was very difficult...she's so cute, I wanted them all!!!), and the pictures were printed within a few minutes. Cayman was very expressive. At first she was sleeping, but moving her around made her wake up and it was close to feeding time so she decided to be cranky. Here's the collage that we got framed of all her expressions during the photo session

A Few Pictures

Our morning at the Health Center went great. It consisted of getting Cayman registered at Duke, they took her weight (7 lbs 9 oz.), height (21 1/2 inches), head circumference (42 cm), temperature (normal), blood pressure (it took 3 tries because she was so wiggly and it came up a little low, but she was still moving around so it might not have been an accurate reading), and some blood was drawn. I thought that I wouldn't be nervous to have her blood drawn having it be so minor compared to everything else I've seen her go through, but I was wrong. Hopefully tomorrow they'll be able to get her IV in without a problem. She was sleeping when they took her blood today. She woke up and cried a little but was so easy to console.

Here's a few pictures for now. I don't have much time. We ordered subs from Jimmy John's and as you know they are freaky fast so it'll be here soon.


Our Hotel room here in Durham


Cayman looks so small on a Queen size bed

pretty in pink. This outfit is Newborn size and it's still big on her. She's finally too big for preemie clothes.


the view outside our hotel room. The weather has been around 60 degrees...a nice break from the cold back in Ohio. Plus it's nice to see everything looking so green.

of course daddy had to wear Ohio State clothes here at Duke too!


Mommy holding Cayman in the doctor's office today


This picture was from our trip to Durham. This is when the 5 diaper change took place.

In North Carolina

Sunday April 13

We made it to Durham, NC today. We left yesterday evening around 8 p.m., drove a little over half way and stopped in Charleston, WV to get a hotel at 3 a.m. We weren’t planning on leaving so late yesterday but we discovered it takes so much longer to pack for 3…especially when that 3rd one is for a baby! It’s incredible how much stuff a baby needs!!

Cayman did very well with the drive. I was feeling very nervous about this road trip…mostly for her and some for me. I was afraid that much time in her car seat over the last 2 days would be tough on her plus make the drainage from her head worse. But she handled her car seat very well, slept most of the time and her head is actually less sunk than it was. Two answers to prayer!! I was nervous for myself because I’m still a little sore from my C-section 5 weeks ago. I did well though. The soreness intensified only as I was climbing between the front seat to the back seat. The front passenger seat reclines very far back so I would sit there to take a nap, and then climb in the back to be with Cayman when I wasn’t sleeping (which was most of the time).

Mike and I were impressed with ourselves how well we have managed such a big trip as first-time-parents...we didn’t forget the baby, leave anything behind, run out of diapers, or lock ourselves out of the vehicle. It’s always a success when these things don’t happen. :o)

Our more dramatic road trip moments were:

• Last night Mike felt the urge to pray for our safety again when we were about 4 hours into the trip. It wasn’t even 10 seconds after he was done praying when a deer ran out in front of us. Because there was no other cars around Mike was able to pass into the opposite lane to dodge the deer. “Thank You God!”
  
• We stopped today for awhile to give Cayman a break from her car seat, feed her, change her, and get something to eat for ourselves. The dramatic part was when Mike changed her diaper. It took 5 diapers in this single changing:
  1) the messy one she was wearing-it was full
  2) the 1st clean diaper: Mike was changing her on his lap in the van. He slipped the clean diaper under the dirty diaper that was still on her bottom. When he opened the dirty diaper and discovered how full it was he had to pull it out to wipe her bottom clean, which made the clean diaper now dirty.
  3) the 2nd clean diaper: Mike slipped this one under her and as he was about to fasten it she peed all over his hand and the new clean diaper
  4) the 3rd clean diaper: So Mike did the whole process again, slipped a clean diaper under her and pulled out the dirty one. He actually got this diaper fastened when we heard it…..a very large, juicy fart. This diaper was filled with more messiness!! We were laughing so hard at the insanity of it! He waited a bit before changing out this diaper to make sure all her jobs were done!
  5) the 4th clean diaper: finally a winner! So we put Cayman back in her seat and hit the road, leaving a sack full of dirty diapers in Virginia.

Our hotel (Millennium Hotel) here in Durham is pretty. The hospital got us our hotel reservation at their medical discount rate. It's a great deal! And what a blessing to stay at such a comfortable place that is still affordable. Our bedroom is large with 2 queen size beds. I have access to wireless internet only in the lobby. I hope that doesn't hinder my blogging since I don't have the internet right in our room, but it might. The hotel is only one mile from the Duke University hospital and the Medical Center. The Medical Center is where we'll be going tomorrow morning and Tuesday morning. It's Tuesday morning when Cayman will receive her stem cell infusion. How exciting!!

That's all I have time to write for now. Cayman's crying to be fed. Didn't I just feed her?!! hehehe She's so cute! As soon as I find where we packed the card reader I will post pictures of her from our trip.

Today's Appointments

G-tube:
Cayman's G-tube is fine. Nothing wrong with it or infected. Since the stitches are no longer intact, we have to be extra careful to not pull on the tube so that it does not come out. She'll have the G-tube in for another 2 months even if she doesn't need it. I guess they want her stomach to adhere to the wall of her abdomen which takes about 3 months after the G-tube is placed. She's had it in for one month, so we have 2 more to go. There's a problem in removing the G-tube before the stomach adheres to the wall of the abdomen. The skin hole closes up very quickly, but the hole to the stomach takes longer to close. If the stomach is adhered to the wall of the abdomen then it acts as a "plug" to the hole of the stomach. So if the stomach is not stuck to the abdominal wall then there's an open hole for fluid to leak into or out of the stomach. Hopefully I explained that well. We were hoping to find out if they could change out her current G-tube (which is called a Malecot), to a button G-tube. The button device would sit flush to her skin so there would be less worry that it would get caught on something and get pulled out. However, the end that inserts into the stomach (called the balloon tip or mushroom tip, which is what helps hold the G-tube inside the stomach), is too large for a newborn's stomach. It could block the opening in the stomach to the intestines. They generally place the Button G-tube when the baby is around 2 months old. So we have one month to wait for that. But for now we're really enjoying the free hours we have from the chimney. We only use the chimney during Cayman's feeding time. We feel much more mobile with her now.

Neurosurgeon:
Last week the Neurosurgeon said Cayman's fluid is draining too quickly, decompressing her head to an unhealthy level for her. Her head measured the same today as it did last week (41 cm). Her soft spot looks less sunken. So the doctor's words were, "It looks a little better, definitely not worse, but we're still far from where we want to see it". So he's going to continue to watch it over the next few weeks, which means going to Ann Arbor for us. If it doesn't get better then he's going to take Cayman back to surgery, put in a 2nd shunt that will regulate the valve setting from the shunt she has now. This will slow down the fluid drainage. Unfortunately shunts are not made with a shut-off valve, which would be the most ideal for Cayman in her situation right now. If there was a shut-off valve, the doctor could just stop the flow of the fluid in her head, and then turn it back on once her head has expanded so her skull bones aren't overlapping and her skin isn't stretched over top of the shunt. I know it doesn't sound like it makes much sense that her skin is so stretched if her head is shrinking. What is happening is, the way her skull bones are overriding each other it is pulling her skin upwards tight across the top of the shunt. I'll have to take a picture because that might explain it better than my words.

Duke:
We finally have our date set to go to Duke University for Cayman's Stem Cell Therapy. One of my previous blogs I had shown a video about it. This webiste tells more about this stem cell therapy that has been done on kids with Hydrocephalus. We leave for North Carolina on Saturday...yep this Saturday! It was just decided today. I feel like I'm about to go out of mind trying to figure out how to get ready for this big trip that we're so excited about!! Mike will work Friday night, sleep some on Saturday and then we'll leave. His boss and everyone he works with has been such a blessing to us. Mike's had to take off so much work over the last month with Cayman and they have been so understanding. That has made things so much easier for us. We're driving to Duke. We estimate it will take about 12 hours. We thought about flying but Duke thought it would be easier on Cayman if we could drive since the pressure on airplanes can be harder on babies. So we'll drive most of it on Saturday, stop for the night, and arrive there Sunday. We'll be there through Wednesday and then head back to Ohio.

I was checking out Cayman's G-tube today and noticed that something looked different.

This is what the clamp looks like. We change the clamp once a week.

When I took the clamp off to readjust it. I noticed that the stitches have pulled away from her skin completely exposing the tube going right into her stomach and there was more gross seepage coming out. Here's a picture of it for those of you that don't have a weak stomach. Her skin is all red around it just from the stickiness from the clamp. It's like taking a bandaid off....the skin is red where it is sticky and it goes away shortly. So nothing is wrong with her skin.

So we called the Pediatric Surgeon's office that did this surgery. His nurse called us back in the evening. Tomorrow, we're going to Ann Arbor for her Neurosurgeon appointment, so before we go there we'll stop by the Ped. Surgeon office and have the nurse look at it. They don't have clinic hours on Thursday so a doctor won't be in but we do have an appointment with him on Monday. We're basically stopping by there tomorrow to find out if her G-tube is suppose to look like this or not. One really good thing did come of this phone call to the G-tube nurse. She thought that since Cayman is eating all her food orally and she's doing so well (not spitting up, etc.) that she didn't need to be vented (which is using the Chimney) 24 hours a day. Instead, to set up the chimney just while she's feeding. The nurse checked with Cayman's doctor to confirm this and it was ok by him. He was very surprised to hear that she was feeding completely by mouth. Once again, a big proud smile was on our face!

It's A Wonderful Life

As long as I don't compare our life with Cayman to all the others that have kids without birth defects I feel completely content. That tells me I have more growing to do so my contentment in this situation is unconditional. I get angry that Cayman has to go through so much even though she's been such a trooper about it all. I hate that I know we'll be back in the hospital with her again sometime in the future for more surgeries. I hate that I don't know how to dream about one year from now, or two, or three, etc. I don't know if I'll be able to take my little girl to the park and watch her run around playing. I hate that I don't know if she'll ever be able to say "Mama". There is so much I do not understand. I know what the Bible says: Psalm 139:13 "...You knit me together in my mother's womb." So does that mean God intended for Cayman to have all these issues? For months I have not come to the answer to that. But whenever I bring it to God the answer I do receive is: "Cayman was created in love, and for love." I have a lot of growing to do and a lot of understanding to obtain. Years ago I made up my mind in life not to be one that strays from my faith in God even and especially when life is tough. The way I see it is it's not real faith if I have it only when things are going my way. I can't really say I believe God made Cayman's brain to be damaged, or for her to have so many surgeries in order for her to live. But what I do believe is a life without love is useless. I do believe that God has our best at His heart. He is a big powerful God that if He did not make Cayman like this then the other option is He allowed her to be this way. And I trust that it is for her best and ours. He has plans that clearly were not our plans. But because I know and believe He is a God of love I can know He is there with good intentions. I think it's society that shapes our minds to think of this situation as more of a tragedy than a blessing. At one time all I could feel was the hardship from it. But my feelings have already begun to change...a lot since Cayman has been born...and even more since we came home with her. I no longer feel like we're living in a tragedy with Cayman. It's much more of feeling love, growth, and blessed. I am far from understanding where and how God fits into the exact creation of Cayman, but I am so glad He gave her to me. I hope no one thinks of our little family and feels bad for us. We are not living in sadness. If you would come into our home I think you would find a very happy place. We have love. We have faith. We have hope. Our life is beautiful!! Our life is blessed! Someone compared us to Job once. But we're so far from a Job situation. Job had losses...big losses. We don't. We have gains. We have Cayman and even though things may be hectic and stressful that does not take away any of the beauty we have in our life with her. This last month since Cayman has been born, Mike and I have laughed together, fought very little, hugged a lot, and are truly enjoying life with our beautiful Cayman. I hope no one feels sorry for us. I hope everyone will look at us and see love, joy, happiness, and beauty because that is what we feel we have!

Cayman's Head

Cayman's head looks to us like it might be a little better. If you remember from an earlier post the Neurosurgeon said the shunt was draining the fluid so quickly it was making her head dip in the front and the back skull bones come forward and overlap the front ones. It's not a big change, but it does seem to be a little better. The dip at the front of her head seems to be less steep. So hopefully the shunt is finally balancing the fluid drainage as it should. I really don't want her to go back to surgery soon. We see the Neurosurgeon on Thursday so we'll find out what he thinks about it compared to what it looked like last week.

Today has been the first in the last couple days that Cayman has not been fussy almost constantly. I think it was her belly. I'm not sure if I ate something that got in the breast milk that could have made her not feel well. I had a burrito that had some onions on it. I don't really know much about this stuff so I don't know if that could have made her not feel good. I had not gotten much sleep because the only thing I could do to sort of calm her down is hold and rock her and Daddy has been at work. My mother-in-law came down early in the morning (around 6 a.m.) and held her to give me a break so I could sleep. Last night Cayman seemed to feel a lot better. She only fussed from 2 a.m. to 4 a.m. I know 2 hours must seem long, but it didn't feel so much since the 2 nights before she fussed off and on the whole night. She had so much gas and whenever she would pass it or poop she would be better for a bit, then it'd start all over again.

Cayman has been eating only by bottle for, I think it's been 4 days now!! She's eating so well and has turned into quite the little piggy. She eats even more than she did through the G-tube. She was taking in 66 ml, and now she eats anywhere from 70 to 80 ml's by mouth. What a big difference compared to when we first brought her home from the hospital she would only eat 15 ml and it would take her 20 minutes to do it. I am able to get more rest now since we don't have the G-tube feeding step. We see the Pediatric Surgeon one week from this Monday and I am REALLY hoping he will say she no longer needs the chimney part of the G-tube. That will make A LOT of Cayman's care so much easier. Having to keep the chimney suspended above her and making sure to not let it get caught on anything so it doesn't tear the G-tube out of her belly has made everything more challenging. I've gotten good at handling her independently. It use to always take 2 people to move her just because of the chimney. One person would unhook the suspended chimney, while the other person picked her up, then we'd move together making sure not to let the G-tube become stretched, and then sit down with her, and hook the chimney up to the post-it board stuffed in the cushions of the couch. I have figured out how to move her by myself. Try to picture this as I describe it. When she's laying in her bassinet, I lean over, unclamp the chimney and hook it to my clothes around the shoulder area, keeping myself bent close to her so the G-tube isn't being pulled. Then once I have it hooked to myself I pick her up, sit down on the couch, set her bottom on my lap, hold her head with one hand, grab the boppy with the other, tuck the boppy under her, lay her on the boppy against me so I can have two free hands to unclamp the chimney from myself and hook it to the post-it board that I already put in place in the cushions before I picked her up. Then once I am in this position, all settled in, I try not to move for awhile. To make that possible I put a TV tray set up next to the couch that has everything on it that I need: her diaper changing supplies, nose bulb sucker, tissues, water, hand sanitizer, TV remote, telephone, etc. To change her diaper I just keep her on my lap. I've gotten good at changing her like that too. I always slip a clean diaper under her before I remove the dirty one just in case, so if she does decide to potty some more I don't have to figure out how to get up and get both of us changed. Even though this whole process is more work just by myself, I love being able to take care of my baby independently. I don't know if that's a "mommy-thing" but it helps me out so much emotionally knowing I can take care of Cayman without always needing someone else there to help.

God Speaks Through Children

A very interesting story was told to me from my mother-in-law (Sue). Sue was talking to a friend of hers about Cayman and all her issues. She had meantioned that on Cayman's right thumb there is an extra bone that the doctor thought could have been the start of a 6th finger. This friend went home and found that her daughter, that is a 2nd grader, had drawn this picture. When the mother questioned the picture, the girl said "I drew 6 fingers holding tulips. I'm not really sure why I drew 6 fingers, but everything's ok." This 2nd grader knew nothing about Cayman and her fingers. Nor does she know me and know that tulips are my favorite flower. I was completely wowed by this!. Was it God telling me, "Everything is ok"? Sometimes things don't make sense but everything can still be ok.

Night Night

Here's Cayman saying her bedtime prayers! :o)

Cayman's Onesie

When we were still in the hospital with Cayman, my mom brought us this onesie. It is amazing! Our good friend Jim Miller drew this design onto this onesie! This man has serious talent!!

There was a letter along with it that read:

Dear Kristen & Mike,

I first used this pattern about 8 months ago. My sister-in-law asked me for something special and this is what I came up with. I'ven never given it a name, so I've decided to call it "Cayman" now. Your beautiful daughter should be its namesake. Any use it will have in the future will bear her name. I also included a wish for her in the design. That wish is that no matter what happens in life, Cayman will always wear her heart on her sleeve.

All my love & Prayers,

James Miller

Does that not move you to tears? It's so touching! Jim is starting a business of drawing on clothes. If you want to order your baby a "Cayman" onesie or find out what else he designs you can email him at jim@ryanwallaceshow.com.

Pediatrician

Cayman had her first appoitment with the Pediatrician. It was a pretty uneventful appointment compared to all the others we've had in the past. She was weighed (7 lb. 5 oz.), head measured (41 cm), length (21 inches), and checked over. She's not jaundice, so we were happy to hear that. The doctor said that typically breast fed babies are more yellow and she wasn't concerned about it. She took Cayman's bandage off her right leg that was there from her Broviac IV when in the hospital. She also clipped off the remains of her umbilical cord because it hadn't fallen off yet. That was pretty much it. We see this doctor again in 2 weeks.

Only once in the night did we feed Cayman through her G-tube. She continued to bottle feed all day for us. She also went shopping today for the first. We went to Babies R Us after the Pediatrician appointment. There were several different items that we got that will hopefully help make our life at home and on-the-go easier. Daddy and Mommy are very exhausted now from our outing. Hopefully Cayman will be less fussy tonight so we can sleep. Last night I had only about 1 1/2 hour sleep and I don't think Daddy had any before he had Grandma Sue come down at 5:30 a.m. and sit with Cayman so we could sleep until Sue had to get around for work. When Cayman fusses like that the only thing that seems to soothe her is being held.

Today is Mike and I's 4 year wedding anniversary. The special thing we did today was all 3 of us were together! It was a very special day!

I Have My Miracle

During my pregnancy, when we had learned of Cayman's anomalies, I felt complete devastation. We kept hearing of the countless people praying for a miracle and that our baby would be healed. I had a strong sense that Cayman's birth defects would not miraculously go away. That was not the miracle that would happen. I had said "I will feel I received our miracle when 4 things take place: my baby can see, hear, talk, and walk". But I realized something tonight while I was looking at Cayman. I have already received our miracle without needing her to do those things. I could not be any happier and proud of my baby. I do wish for her to not know pain...emotionally or physically...but what loving mother doesn't wish those things for their baby? She is my miracle. I have my miracle! "Thank You God!"

Thank you for praying. Perhaps Cayman would not be here today if it was not for all the prayers! Seriously, how did this baby survive with all that formed incorrectly in her body?! "Thank You God for giving us our miracle!"

Great Feeding Day...and Hats for Cayman

Wednesday April 2, 2008

Today has been an incredible day for us! Cayman took all her feeds from her bottle today. Not once did we have to hook up her G-tube to the pump and feed her that way! This baby is amazing!! She just suddenly took off with it. I sure hope she can keep this up! Daddy and I felt like we had so much "free" time being able to skip the G-tube feeding step! I had two hats almost finished at the end of my pregnancy, so I got those out this evening and finished them while Grandma (Mike's mom) bottle fed her.

Here's Cayman in her two hats. I am aware I have her dressed in boy P.J.'s. That's because at 3 a.m. I heard Mike calling me for help (I was asleep). I came out and she had pee-ed through her clothes and just spit up. So she got a quick bath and this boyish sleeper was all that is clean that fits her. All her newborn (size 0) are big on her. Preemie clothes are fitting her perfectly right now.This was the first that as soon as I was done knitting a hat I could just go over and have Cayman model it for me instead of putting it away in a drawer and wait until she's born! I had so much fun with this!!!

Cayman's G-tube

This is what Cayman's G-tube set up looks like. It's a little different than a regular G-tube feeding. The syringe at the top is called a "chimney". The tube that comes out of her stomach hooks into the syringe that is open to the air. This allows the air in Cayman's belly to be released. More bluntly stated...she belches through this tube. Once in awhile she burps through her mouth but it's mostly through the syringe. The chimney allows for her stomach to be under less pressure while it heals from her belly surgery. The chimney is hooked up 24 hours everyday for a month. This makes holding her and moving her around challenging. The chimney needs to be suspended above her body. The picture to the left is how it was set up at the hospital. Of course they have the perfect set up for these sorts of things. So here at home we've had to get creative in how to suspend the chimeny. Good thing I have an engineer for a husband. He came up with this idea: There's a fabric band velcroed around the top of the syringe. We use a clamp to hook this fabric to one of those post-it boards. We stick the post-it board down in the cushions of the chair or couch we sit on when we hold her. We are very careful to never forget about the chimney. If we would just stand up with her or move her forgetting to take along the post-it board with the syringe attached, it could tear the G-tube right out of her belly and then we'd be off to the E.R. We have an emergency G-tube replacement kit that we keep in the diaper bag so it always goes with us. If the G-tube would happen to pull out of her stomach we have only one hour to get to the E.R. before the hole starts to close up. If it does close up too narrow that they can't get the G-tube back in then Cayman would be taken to surgery to place the G-tube again. So you can see why we NEVER forget to be mindful of her G-tube chimney set up. We are really looking forward to her not having the chimney part anymore. Once she loses the chimney syringe, she'll still have the G-tube for another month. That's what the doctor said. Cayman has been uping her feeds more and more every day through a bottle that maybe the doctor will take the G-tube out earlier than he anticipates *fingers crossed*. The chimney is the largest part that makes holding her, bathing her, dressing her, etc. challenging. This picture shows how we hook the chimney up when she's in her bassinet. We use this same kind of set up for her car seat too.

I've had a few people ask me, if I'm already pumping why don't I just breastfeed instead of bottle feeding. The ultimate goal is definitely to feed at the breast. Cayman has a very weak "seal" around the nipple, so until she builds her mouth muscles up, she won't be able to latch on correctly to the breast. Plus bottle feeding allows us to accurately measure out the amount of food she is getting so we know how much to put through the G-tube if she doesn't take it all by bottle. She's shown such improvement in bottle feeding in a short amount of time so I'm hoping it won't be much longer and she might be at the breast. How nice it would be for me...and Mike if she would. It would majorly cut down on all the steps we have to go through right now for each feeding. It's almost like feeding twins or maybe even triples with Cayman: 1) I pump before each feeding 2) She bottle feeds and 3) whatever she hasn't taken from a bottle we finish up through her G-tube. This last step varies in how long it takes and that's dependant on how much food we have to give her through the G-tube. A full feeding through her G-tube takes an hour. Sometimes it's so tempting to skip the bottle feeding step so it's quicker and we can get more sleep but yet that's not fixing anything in the long run. So there's some extra challenges there, but I think it's overall going well.

We've also had a lot of people asking when we are up for visitors. I don't know an exact answer to that just yet. We are very exhausted from Cayman's feeding schedule alone, and then we have a lot of other stuff going on like doctor checkups, home nurse visits, planning a trip to Duke for the stem cell infusion, etc. Plus trying to get some sleep. Cayman has been very fussy since we've brought her home trying to adjust to everything herself. She's better than that first night when arrived with her. So we're also concerned that a lot of new commotion could back-step the adjustment she's making right now. So once her feeding schedule is less hectic, she's more adjusted, we get rested up we'll be ready for visitors then. I'm so sorry we don't know for sure when that will be. Hopefully sooner than later because we are so excited to have everyone meet our beautiful Cayman.

Oh I forgot to add....

There was good news about Cayman that the Neurosurgeon pointed out to us today at her appointment that I forgot to add to the earlier post. He said that the ultrasound that Cayman had last week of her head showed an increase in her brain matter. The Neurosurgeon was pleasantly surprised by this, especially since he said this is usually too early to expect to see changes in the brain.

Neurosurgeon Appointment

Tuesday April 1, 2008

Our trip to Ann Arbor today was our shortest one we've ever made. It was only one appointment and that was with Cayman's Neurosurgeon (the doctor that did her shunt surgery to drain the fluid off her brain). I'm glad it was "short" because there is a lot to figure out in taking Cayman's care on-the-go. Her feeding time was in the middle of the 2 hour trip to Ann Arbor. So I took my breast pump, pumped in the van, then tried to bottle feed her as much as she would take which is difficult since she's so smooshed in her car seat, and then take out her feeding pump, get that all set up, feed the rest of her food through that, and then when she's all done figure out how to wash the feed tubing and my breast phalanges. And then on the way back home I did this whole process all over again. Mike and I were impressed that we were only 5 minutes late to her appointment. Not bad for first time parents getting themselves around and the baby!!

Dr. Maher (the Neurosurgeon) is a bit concerned about the rate the fluid is draining from Cayman's head. It's draining very quickly. Her head has drastically sunk. It seriously looks like her head is collasping on top, mostly in the front, which is exactly what the doctor doesn't want to see. It's making her skull bones overlap each other and is stretching her skin thin over the high ridges of the overlaps and over her shunt. Dr. Maher's concern is if the fluid keeps going down this quickly her skin could tear over the area her shunt is located. He is also concerned about her skull bones overlapping each other. Cayman's skull bones are larger than an average baby's because her head was so large. It will take awhile for the growth of her head to grow big enough to push the skull bones back out so they aren't overlapping, and it's possible the bones will fuse together overlapped before her head has a chance to expand. The biggest problem with all this is Cayman's shunt valve has already been set to drain the fluid at the lowest rate. So Dr. Maher wants to see us next week, and until then whenever Cayman's laying down or when we're holding her, her head needs to be lower than the rest of her body. Not so she's standing on her head, but a slight incline....or decline I guess it would be. Hopefully this will slow down the fluid drainage. Dr. Maher is staying optismistic that this is something that will work itself out. If not it means one of two surgeries to fix this situation: 1) to put in another shunt that will regulate the shunt she has now or 2) take her shunt out, let the fluid build back up, then go back in and place the shunt again. Neither one of these is a "pretty" picture for Cayman. So please pray hard for her. I'm so afraid she'll be back in the hospital soon. And I'm afraid that another surgery so soon will mess up her progess she's made with bottle feeding. It's still weak, but each day there is a little bit more improvement. In fact, today she's taken two full feedings from the bottle!!

She sees the Pediatrician on Thursday. Cayman's skin is starting to have a yellow appearance to it, as well as the whites of her eyes, which can be signs of jaundice. So we'll talk to the doctor on Thursday about this.

Home Sweet Home

My intent is not to stop blogging now that Cayman is home. Her journey is only beginning and just like in the hospital, we have been so amazed by this little girl's progress here at home. It's so worth making the effort to blog as much of it as I can. She is feeding out of a bottle some. There has been a few times she actually has taken a full feeding from a bottle which right now is 66 ml. That really helps out a lot when we don't have to feed her through her G-tube. We're still working out coordinating her feeding routine with the rest of her care so that I can get some sleep. She feeds every 3 hours. So I pump before each feeding, then we try to bottle feed for 20 minutes or sometimes a little more if she shows she'll continue with the bottle, then whatever she doesn't finish eating by the bottle we feed her through the G-tube. Time I get all this done and get her G-tube equipment and my breast pump phalanges cleaned I have about an hour and a half til I gotta do it all over again. It should get better as I get faster at it and as Cayman starts to feed more through bottle. I'm still learning my way around the G-tube equipment. My mom and Mike's mom (Sue) have been a big help to Mike and I.

Cayman has been very fussy. We think it could be her adjusting from the NICU to home. Her fussiness makes it tough to get some sleep when we're not up feeding her. So my mom or Sue have been with us a lot taking care of Cayman between her feedings so we can get some sleep. This has been such a blessing. I have discovered I have nothing in my reserve to handle pulling all nighters. When we came home with her on Friday, we got in late...around 11:30 p.m. We had all of our stuff, plus all of Cayman's stuff and her equipment. All of that was unloaded all over our living space downstairs at Mike's parent's house. It was a mess. So for the last couple days we have been trying to figure out where to put a house full of stuff in our two-room "cottage" we live in. So far no leads on anyone buying our house in Indiana. Besides lacking space to put all of our stuff, it is working so well living with Mike's parents. We're comfortable here, and it's great to always have eager help only a few steps away. I laugh at the irony of the situation, that once our 2800 sq ft house sells and we get a 2 bedroom apartment it's going to feel like we have so much space!

Now that we've gotten a lot of our stuff more organized and our huge pile of mail sorted through, I'm hoping to be able to blog more frequently again.

I'm sure there is a ton more I could blog about but my brain just hit a wall. So I'll just close with pictures of bringing Cayman home from the hospital!