Monday, July 30, 2007

Long Time Coming

I have been thinking about this post since before Kanyon came home from the hospital, but haven't found just the right time to sit down and write it. It may be done over several days, but I have things I want to say to all my bloggers! It might be long.

When Rachel called me after the babies were born and asked if I wanted her to "do something" to get the word out, I knew I wanted people to know about the babies so that they could be praying. I was thinking our family and a few friends. I had no idea what this would become....instantly! First of all, as I've said so many times before, THANK YOU! When I was still in the hospital, someone would bring us the posts each day and we would read through the comments. You have no idea what that meant to us. We were so overwhelmed with so many feelings with Jayde and Kanyon that being bombarded with these amazing comments was healing for us. So to old friends, new friends, family, and strangers..thank you! I will never EVER forget what this outpouring has meant to us.

Through all of this and our "blog following", there have been 2 things that I keep thinking about. Those are the things I have been wanting to share.

First, this will forever change the way Kory and I treat others who are going through a hard time. We have received comments, phone calls, cards, emails, etc. from people I would have NEVER expected. For months our mailbox was overflowing with cards. Though it has slowed, we are still getting cards almost every day. To know that people cared, prayed, and haven't forgotten lifted us at low points and carried us through hard days. We pray we will remember this and that it will drive us to take that step and send a card or call someone when they are hurting. Always before we would pray, but I'd never taken the time to let people know I was praying. Because of what our loved ones have done for us, we are changed.

Secondly, I learned quickly that you never know who is reading your blog. The response to our situation has been such a testament to GOD's people-impressive and powerful (that's y'all bloggers). I have thought so many times that there has to be people out there reading this blog that aren't Christians or have lost their way. If they are reading this and have read it over the last 4 months, they have witnessed the outpouring of love. I want them to know that THIS is what being a Christian is all about. This is not because of anything me and Kory are or have done, this is what Christians do. They pray, love, and carry each other. Thank you for doing that for our family. So if there are people out there who have been impressed by the response we've gotten, know that the love shown to us is an overflow of the love of Jesus. This is Christianity. So to those of you who have shown us so much love, you have been an example. May the example of this love point people to Jesus.

As I say that I revisit a thought I've had many times over the last few months. At times it brings me comfort, at times it doesn't help, but that is how grief is I guess. My thought is that if our baby Jayde could play a part in saving just one person, her life was a success. Maybe this blog has helped her do that.

So to all of you out there who have loved THE PHILLIPS PHAMILY, we thank you. It has made a difference, it has helped us, it has changed us. I will show this to Kanyon one day and he will be able to see how loved he was and how special he was from the first second he was born. He will know that lots of people loved his sister and that she was a powerful little girl.

I know that we have no idea what the future holds for Kanyon and for our family. I know that we will probably need your prayers again. You have carried us through 100 days of intense experiences and there may be more intense times ahead. But for now, we are settling in to "normal life" and hope that you will continue to follow the Grand Kanyon as he grows. After all, you can't see that little one pounder and not follow him to Kindergarten! :)

This verse has been special to me as I reflect on the comfort we've been given by The Comforter and His people.

2 Corinthians 1:3-11
Praise be to the GOD and Father of our Lord Jesus Christ, the Father of compassion, and the GOD of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from GOD. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation. If we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort. We do not want you to be uninformed, brothers, about the hardships we suffered in the province of Asia. We are under great pressure, far beyond our ability to endure, so that we despaired even of life. Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on GOD, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.

Much love from the Phillips Phamily

Friday, July 27, 2007

Home Again, Home Again, Jiggity Jig!

Is that how you spell jiggity???? Anyways, the point is, we're back home. We had a LONG trip home from Dallas.... left the hospital about 4:30... just in time for traffic. We made it home about 9:30. Kanyon did great in the car, but was glad to be home to kick and play on the floor. Kory had the house spic-n-span clean when we got here! How great is that?!

Thank you for praying us through another surgery. We hope this is the last one for a long long long long time. We are so thankful that Kanyon's body has healed so well after all of his surgeries. His incisions look great. The biggest one is on the top of his head. They put the new shunt in where the old shunt was. They had to make that cut bigger, so it is a whopper. There is a small incision behind his right ear and then one right above his belly button. You can barely barely see the shunt on the top of his head (so that big bubble you've seen in all the pictures is gone) and you can see the tube barely in one spot on his chest. They said as he grows, it will almost all disappear. We are in a way relieved to have all of this behind us. We're ready to move forward without another surgery looming over our heads. They say that the shunt shoudn't cause any trouble. We can just carry on as normal. We pray that he will stay infection free and that we can avoid complications. It is wierd to me that now there is something in his body that will be there forever. They have assured us that "we'll forget it is even there" and he will be able to do whatever he wants to do. We just hope it is an uneventful addition to his anatomy! :)

By the way, Kanyon turned 4 months yesterday. Stinky that we spent yet another birthday in the hospital, but we'll pretend and have our 4 month bball photo shoot here at home! Well, I'm going to go enjoy my little family in our own house! Thank you again for your prayers.

Wednesday, July 25, 2007

Another quick update

Kanyon is now in a regular room, and when I talked to Jaymie, Kory was holding him, so he is doing great. He didn't have to stay on the ventilator or anything, but they are going to keep him for another 2-3 days just to make sure he's eating good and that his incisions are healing well. So let's pray for quick healing so they can go back home.

Out of surgery and doing fine...

Jaymie just called me and said to let everyone know that Kanyon is out of surgery, and the doctors said everything went well. He will soon be moved to a recovery room, then they'll get to see him and we'll get more details. But they just wanted everyone to know right away that it's over and he's doing just fine. Praise God and thanks for your prayers!

Tuesday, July 24, 2007

Surgery Schedule

We have a plan for tomorrow. We spent several hours at the hospital today getting things lined out. Kanyon had to be checked out, lab work, go over history (his is quite long for such a young little guy), etc. We got the green light for surgery to go on tomorrow. We are scheduled for 10 am. Of course we've learned through all of this that times don't mean a whole lot, but that is what we're shooting for. We have to be there at 8:30 to get things started. We think the surgery will last around 3 hours. If he does OK waking up and stuff, he'll go to a regular room. If he needs to stay on the vent a little extra time, he'll go up to ICU where we were before. I hate that vent so much. I hope his little lungs will stay strong and come right off the vent. Dr. Sklar is his neurosurgeon (same on that did the first procedure) and he will have the same anesthesiologist. They say this one is the best in the business. We are thankful for things like that. We ask for your prayers for Kanyon tomorrow. It is hard to see him have to go through all of this. After having him home like a "normal baby" it is hard to go back to all of this stuff. We pray for strength for Kanyon's little body, infection free procedures, and of course the wisdom and hands of his doctors and nurses. We will update you as soon as we can tomorrow. Of course that may mean the return of RACHEL the original Phillips Phamily blogger!

On another note, yesterday Kanyon had an appointment with his eye doctor to follow up after his laser surgery he had a few weeks ago. The Dr. said he looked GREAT and used the words "normal" a lot when he looked at his eyes. It looks like the surgery worked and things seem to be developing. So that was great!

Thank you for going with us through yet another day in the hospital. We are very thankful. We'll post as soon as we can tomorrow.

Thursday, July 19, 2007

Dallas Update

Blogger wouldn't work for me last night, so I wasn't able to update..but here I am today. Our trip to Dallas went good. Kanyon did fine in the car..he's just going to have to grow into it. He had his CT scan and then we met with his neurosurgeon. He said that his ventricles were smaller, but still large. So..we are having the permanent shunt put in next week. He said he just feels like he'd rather go ahead and fix it and be done with it than sit around and wait to see if it will go away. We really feel OK about this. At this point, we are ready to do whatever we need to do to get things back the way they are supposed to be. We will go to Dallas for pre-op Tuesday and the surgery will be Wednesday then he should go home maybe Thursday or Friday. I don't know much about the ins and outs of the shunt or the procedure, but we'll learn all of that Tuesday. I asked about damage and the Dr. said they can't really tell how much. He said that the right side does have some because that is the side that the ventricle is so much larger, but he said you never know what that means. That is probably as good of an answer as we're going to get. It is just such a broad range with so many different possibilities that there is no way to know. All we know is that he is at high risk for things and we will start now working on those. The good thing is working on those things does make a difference, so we can start helping before we even know what is going to happen. And the bottom line is, nothing they tell us will change a single thing. So..that is what's next for us. Like I said, we feel good about this and think this is the right move. I think it will ease some of our worries. So, back to the hospital we go, but this time we will be in pediatrics!! WOW! Not Neonatal! Thanks for your prayers yesterday.

Wednesday, July 18, 2007

Dallas Eve

Dumb title, but now that my titles aren't Day.... I have a hard time thinking of a title for each post. We are headed to Dallas early tomorrow morning (get it, Dallas Eve?). We have to be at the hospital by 8-8:30 and his CT scan is at 10, then we will meet with the neurosurgeon to see what he thinks of the CT scan. We are asking for your prayers...for a safe trip in the car and for a good report. We are a little anxious/nervous, but also ready to just hear what they see. We aren't sure how much information they will be able to tell us. I think our biggest worry is obviously the possibility of damage, but we don't know if we'll know anything about that tomorrow or not. I know so many of you have been praying for this little head for a long time. Thank you!

On another note, Kanyon's Physical Therapist came Monday and did a little evaluation. Kanyon did not mind his manners..he slept through the whole thing! But, she was able to see some things. I was so glad to get a little information about the things that we will need to be doing with him. She will probably come 2 days a week for a while, then we'll go from there. His Occupational therapist will come next Monday to start that therapy. I am so thankful that we have these resources so soon. I know that early intervention makes a HUGE difference for little ones that may have trouble. We figure this is about as early as it gets! :)

Oh..and to answer the leg question. That thing on his foot is a brace to help straighten out his foot. That foot bends to far up and kind of out. It has affected his muscle tone in that leg and some of his reflexes. We aren't sure of the cause. Could've been from being squished since he was sharing my tummy with his sister, or it could be a neurological effect from the things that have gone on in his brain. We aren't sure. The brace has helped some and his muscles are starting to loosen up at his ankle so that there is more movement. We have to do little exercises with it..poor rest for the weary.

Didn't want to post without a picture. Just a little family moment...don't we look great without those yellow NICU robes! :)

We'll update about our Dr. visit as soon as we can. Thank you again for your dedication to our son. As soon as he can talk, he'll say thank you! Until then, it will come from us!!! THANK YOU!

Monday, July 16, 2007

Dr. Visit

Kanyon had his check up with Dr. Chris today. Dr. Chris was his neonatologist, but he is also a pediatrician, so that is really good for us! Everything was good with the check up. We are heading to Dallas Thursday to meet with the neurosurgeon for a CT scan. Please keep praying for his head. We aren't sure how much we'll learn--the Dr. just wanted to look at it and see where we were. We'll keep everyone posted on that. Here are a few pics from the last few days:

Sweet baby laying on our bed. He is starting to get more hair. It is so soft and fuzzy and kind of reddish!

We were cracking up at him when we took this..he had just had a bath and I guess it relaxed him. He was like a rag doll! Arms and legs limp...mouth falling open..eyes rolling around..He looked so content and happy! Check out that tummy!

Hugs from Kanyon!!!

OK..these are from the Dr. visit.

He weighed 7lbs. 5.5 ounces and was 19 1/2 inches long. Both of those are in the 25th percentile for a 25 weeker at his age. This is where the confusion happens with adjusted age (his would be about 1 week...they basically count him from his due date) and his chronological age (his would be almost 4 months...his actual birthday). He will have an adjusted age until he's about 2 and hopefully by then he'll be caught up with other kids born when he was. The percentiles from today are compared with other 25 weekers at this chronological age. That may be as clear as mud. Sorry.

Good Ol' Dr. Chris

Poor baby got 3 shots while we were there. He did cry louder than I've ever heard him cry, but only for a second and then he was through.

accidentally put this on there twice..can't figure out how to take it off. sorry.

Friday, July 13, 2007

A few of Kanyon's favorite things

I figured after Ricky's intense comment on my last blog..I'd better get a post up here FAST! :) Things are going well here at home. Kanyon seems to be getting the hang of the eating thing a little better, so that is good. He has started to wake up a little more and his awake times are SO FUNNY! He is so alert and looking all around, kicking, squirming, and even trying to raise his head up. Most of the time his head just falls right back down, but we like to see him using those muscles. We have to be careful and not play too long so we can eat before he goes back to sleep. All you parents know how hard it is to feed a baby who wants to sleep! My mom is leaving today. It has been so fun and so helpful to have her here. Especially with the amount of time it takes for our warming bottle/eating/burping/pumping/washing bottles and pump stuff/mixing new milk with fortifier/diapering routine. Whew! We are getting a little faster though! Mom has been a HUGE help! Those of you who know my mom....Think she's taken many pictures????? :)
Here are some pics of Kanyon doing a few of his favorite things:

He LOVES this Rain forest soother thing. It makes outside noises and bubbles and lights up. I had several moms tell me to register for it. I did but had no idea that he would love it so soon. He loves it and shows it with his whole body!

Of course this is probably his most favorite thing to do. He's still got lots of growing to catch up on! A special thank you to Cousin Parker for picking out this fleece for him to make a blanket. He loves it! FYI some of you have asked..that bubble looking thing you see on his head..that is his temporary shunt. When we pump it the fluid collects there just under his skin and then reabsorbs into his body. If he has to have a permanent one, it will be in a different place and more hidden.

Tummy time! He loves to lay on his tummy! Today he was really raising his head up, making noises, and being so happy.

Have a great day!

Monday, July 9, 2007

Life at the Phillips house is definitely more fun now! We've had a great few days with Kanyon at home. He was done great...I can tell he loves it here! He still doesn't cry much..he cries a little more (louder) every day. His little lungs are still working towards that. In a way, it is kinda nice. :) Feeding him is probably the toughest part. A lot of the time he just doesn't want to eat and we have to make him. That has gotten better the last 2 days, so I"m really glad. He's taking a bottle every feeding and we "try" to nurse twice a day. He's getting better with both, so that is making things a little easier. I'm definitely ready for him to nurse so I can ditch the pump! That will help me a ton...things won't take as long when I don't have to pump after I feed him. My parents have been here, so they help feed or wash bottles or whatever they can do to speed things up. THANKS! He sleeps good and has started to sometimes kind of wake up on his own about the time he supposed to eat. It seems like his most awake times are after he eats. We fight him to keep him awake while he eats, then when he's finished, he is wide eyed! It is so fun to get to see him wide awake for so long. When he was in the hospital, if I wasn't there at just the right time, I'd miss those times. It is so great to not miss a thing! He has been very patient with his Mom and Dad as we stumble through the "firsts" of parenthood. It is funny the things we know a lot about is all the medical stuff. We're confident in most of that. It's things like changing his clothes, bathing him, and clipping his fingernails where we're LOST! If someone saw me changing his clothes, they'd probably turn me into CPS! :) I'm getting better though.

We went to Dallas today for an appointment with his Neurosurgeon. I was a little anxious because he would be in his car seat for so long. He hasn't quite figured out how to sit in that thing and breathe. Before we left the hospital, they showed us how to prop his back up to help him breathe better. Thankfully, he did great in the car. His appointment went well. His Dr. said he looks good and that it seems like the temporary shunt is still working. His head looks good on the outside and measures normal and his soft spot is nice and soft. We are going back next week to have a CT scan so that the Dr. can see it and check on the inside. He did say that it looks like Kanyon's body may be circulating some of that fluid on its own. That is encouraging. That is what we're praying for. We'll keep you posted on that.

Are you tired of all this writing yet? How about a few pictures of our first few days at home!!

This is Kanyon's Great Grandma Nanny Lou. She got to see Kanyon in Dallas, but this was the first time she got to hold him. It was so fun. He loved her! I am so glad he gets to be in her arms.

The classic baby sleeping on Daddy (while Daddy sleeps too) pictures...just can't resist it.

I've already taught Kanyon how to wave, see?

I took this because he is holding my mom's finger while he eats. CUTE!

This pictures cracked me up...Gangsta Kanyon...

We had a little time in the swing. As you can see we have to prop him up..same idea as the car seat. He liked the swing!

After he learned to wave, he wanted to do jumping jacks..since he can't stand up yet (that's next week) he has to do them laying down.
I think he's checking to make sure we spelled his name right on his blanket.
Not sure what we were doing here...probably just playing. It's like Christmas! You have a brand new toy that you just can't put down! :)
Yes, he slept through his first bath!

Well, the little man is starting to stir and squeak...better go check. We'll try to keep the pictures you can see his first days at home have definitely been documented.

Thursday, July 5, 2007

More Homecoming Pictures

Kanyon has spent his first night at home and he did good. Yesterday was so fun. I don't know what the deal was, but he was WIDE awake all afternoon. I guess he was just soaking in his house and all the excitement. It was so fun. It feels so weird to be here with him. Earlier today I was thinking about something I needed to get from the store. I thought, "I'll stop by and get that on my way home from the hospital" and then I realized..I DON'T HAVE TO GO THERE ANYMORE!!! Crazy! Ok...enough are some more pictures.

Resting in his bassinet

This was our welcome home crowd! It was so great. I couldn't believe it when we saw all the people in the driveway! It was just so thoughtful. I was overwhelmed with emotions. They left us with food, lots of cheers and sweet prayers led by some very special friends. I wanted so bad to just pass Kanyon around, but we can't quite do the "visitors" thing yet. A couple of months and then maybe we can. That is the stinky part about this. We're so ready to let our friends see him and hold him, but we'll just have to wait a while longer.

Kanyon's first glimpse of his living room (and a glimpse it was...he opened his eyes a little, then immediately shut them again).

Cute outfit, huh? Notice the feet are horses! :) Here he is on his changing table looking at his cow. This is supposed to help give him something to look at in black and white....good for his eyes, they say.

I couldn't find the picture that actually showed the whole group, this one is kinda hiding some, but here they are. That all meant so much to us.

Special prayers I will remember forever led by our dear, dear friends. It was a powerful time to remember Jayde and rejoice for Kanyon and pray special healing and strength for his body.

Who else but Jill could come up with this stork! It was great! It's even better at lights up!!!

Despite this face, he really was THRILLED to be home!
Bottle from dad in our own house!
Thank you so much for being happy with us. We are praying for Kanyon to stay healthy, germ free, and strong. Thank you for all you've done. There are lots of things I have to say, but I'll save them for another post.

Wednesday, July 4, 2007

Day 100 INDEPENDENCE DAY!!!!!!!!!!

I am sitting here at my computer while Kory holds Kanyon ON OUR OWN COUCH and he doesn't have on a yellow GOWN!!!!!!!! We are finally home!!!!!!!!!!!! We got here about 2:00. We are so glad we got to room in last night. I think it made everyone feel even better about leaving. His monitors never beeped one time all night long, so those of you out there worried that we don't have a monitor..we don't need it! :) It took a while to get out of the hospital and all, but we are finally here. It is a crazy feeling. I think I was "feeling it" yesterday and now that it is here its numb and surreal. But WONDERFUL! We had the most amazing welcome to our house when we got here. Yet ANOTHER reminder that we are blessed with the best friends in the whole world. Overwhelming and amazing. I have more pictures but they are on my parents cameras and I figured blogland might appreciate pics ASAP so I'll do these that I have and I"ll do the rest later.

This is Kanyon on his last day in the NICU!

Ready to go!

Monday, July 2, 2007

Day 98

Things have changed just a little. We are not going home tomorrow, we're going home Wednesday. We'll be having our own celebration of independence on July 4th. That will also be Day 100 for us! WOW! We are "rooming in" tomorrow afternoon-Wednesday morning. That is where they give the 3 of us a room in the hospital so that we can have him, but still be there if we have any questions or anything. We are still feeling lots of different emotions. We're so excited, but this wonderful step is also mixed with the emptiness we feel without Jayde. We so looked forward to bringing our twins home. We keep moving though and keep thanking GOD for the fact that we are bringing Kanyon home. We'll keep you posted!