Day 96

Hello again! It has been a while. I have a few things to update everyone on. As of about 2 days ago, Kanyon is TUBE FREE!!!! His last tube was his feeding tube and the took that out since he is eating all of his bottles now. Here is his sweet face with no tubes, no tape, no NOTHING! Remember how it used to be covered with stuff?


This was just funny. They sometimes put these hats on them (I think they're sleeves cut into hats). We think he looks like a baker man. But...as you can see, it is a little big and slips over his eyes!

He loves laying on my shoulder like this. He thinks he's a grown up!

3 MONTHS OLD!

2 months (not the ideal angle, but the bubble bed made it hard)

1 month (or close to it)

Amazing to see that growth. We are so proud of him! Probably the biggest news--and the reason my life has gotten extra crazy--is that HE'S COMING HOME!!! Probably sometime Monday or Tuesday! Oh my goodness!! Can you believe it??!?! We have so many different emotions right now. I can't believe it is finally here. So..I've been running around like crazy trying to get things settled for him and still be at the hospital to feed him. I mean I know I had 3 months to get ready for this, but not really. So, here we are scrambling trying to get things ready enough! .

He had a head scan yesterday to check on that, we haven't heard what they thought about it. KEEP PRAYING!!! They're going to do a urine culture just to make sure he hasn't gotten another UTI..hopefully he hasn't. They've started taking him off his meds and that has gone great. We started "trying" to nurse this week. It will be a process, he still has a lot to learn, but it is good to at least get that started.

Pray for us this week. We are so many things right now...nervous, excited, thankful, anxious, but most of all CLUELESS!! :) We'll keep you posted!

We love our NURSES!

I started this post a few days ago, so the date is wrong, but I am posting Day 89 (Saturday 6/23)update: Before I do the rest of the post, I'll update you real quick. We are 5 lbs. 9.1 oz! He is doing better on his bottles. His head scan Friday showed that his head stayed about the same. Obviously we are wanting it to shrink, but we are thankful that it was not worse. We'll just keep praying! Thanks so much for your prayers. We really feel like GOD will heal his head. We know he has the power, we are just asking him to use his power for this healing. Ok, I'll continue with my nurses blog.

Before I was a parent, I remember hearing people talk about how much it meant when other people loved their children. This experience has given us a chance to experience that in a major way. Not only have we learned how much it means for people to love our babies, but we also have learned the love we have for the people who have taken care of our babies. The kicker here is that these people don't HAVE to love our babies. Their job is to take Dr's orders and meet the basic physical needs of our children. These people have gone far beyond the call of duty. Not only have they taken care of our babies, but they have taken care of all of us grown ups too! They have chosen to give more than is asked of them and truly love our babies. I find comfort in knowing that Jayde felt so much love from her nurses while she was here and I know without a doubt that the love these people have shown Kanyon has given him strength to keep going! So...this blog is my poor and futile attempt at thanking these people--Our nurses and Doctor. I want everyone to see this because I want everyone to know how thankful we are and I want you to thank GOD for these people. Now, before I continue, I will say...I don't have a picture of all of them. It is almost impossible to get pictures and now that we've moved to IMC there are new nurses I need to get pictures of. So, this is not a complete "album" but if I waited until I got everyone, I may never do this.





Terry! Terry has been with us a lot. She knows "micro Kanyon" and just the other night got to take care of 5 pound Kanyon. She is calm and informative and has answered LOTS of our questions. For some reason, I remember that Terry is who explained to me the progression of poop. She told me all the different stages to expect to see. Ha! Ha! Terry is a traveling nurse, so she is about to be done here in Longview and go somewhere else. We will miss her!


Melissa has managed to make it on lots of blogs! This is her putting Kanyon back in bed after my mom held him. She has also been with us from the beginning. I remember her having Kanyon a lot that first week. She knows Kanyon very well and that makes her very valuable! We needed her in Dallas! She is so sweet and gentle with all of us. She loves Kanyon and has gone the extra mile over and over with him. When our babies were born, she had just found out she was having a baby, so we're sharing a fun time with her. She is responsible for giving Kanyon his first bottle!!! She was there the day we left for Dallas and was so good. I am so thankful for her and how good she's been to ALL of us. She will be a great Mom!

Shelbi is one of the ladies that got Kanyon through the nights. She was always very attentive and talked so sweet to him! She always kept his womb sounds bear on to help him breathe.

THIS is THE MAN!! Dr. Chris!!! Or "Daddy Chris" as the nurses call him. He is amazingly gifted with knowledge and wisdom, but he is also gifted with compassion, patience, the ability to teach, and the capacity to love so many children at once. We are so very thankful for him and we know that GOD has worked through him as he's taken care of Kanyon and so many other babies. I remember when I was in the delivery room and things were crazy to say the least. I remember everyone asking "Where's Chris??!" over and over and as soon as I had Jayde I heard someone say "There he is..good timing Chris!" I remember thinking, "Who is Chris and why does he need to be here so bad!?" Now I know and I am so very thankful that he was there as soon as the babies were born. He spent countless extra hours at the hospital those first days with Jayde and Kanyon. Around the clock he was there taking care of them and keeping us posted. He worked so hard to save our babies. For that we are forever grateful. We love to hear Dr. Chris talk...we think Kanyon might pick up his Nigerian accent and we love to hear Dr. Chris laugh. He is a very kind and generous man. THANK YOU!

Peggy and Louis- Peggy had the babies at first quite a bit and hasn't had Kanyon in a long time, but she's been there watching cheering him on. Louis on the other hand didn't have Kanyon at all until the last month or so and she has been with him quite often. She put him in his open crib for the first time!! That was a big move!

This is Tracey..funny thing is I don't think she's ever technically had Kanyon, but she's has been very good to him and we enjoy her so much. Even though she hasn't officially taken care of him, she has taken good care of him UNofficially!
Lisa is so very nice, but our time with her was short...She had him for a few days, and then she hasn't had him since. She was wonderful.
Good ol' Jim. For some reason, anytime I refer to Jim, I call him Jim the Nurse. Jim the nurse has been with us from the start and has been very wise. He has not only taken an interest in Kanyon's health, but in mine and Kory's "health" too. That means so much to us to have someone looking out for us as we're riding this crazy roller coaster. Kanyon particularly is thankful for Jim because it gives him a break from all the WOMEN!!! Jim and Kanyon-- Man to Man! I'm sure it is refreshing for Kanyon! :) As if all of those things weren't good enough, Jim is responsible for those priceless first family pictures of me holding Kanyon. When he realized I hadn't held him yet, he got everything ready and insisted upon that!! That day was UNFORGETTABLE and we thank Jim for making that memory for us! Today Jim came to visit Kanyon in IMC and Kanyon was responding to Jim SO much. He was grabbing his finger and looking when he was talking to him. It was crazy! He knew his buddy Jim.

This is Wendi..she had Kanyon for several nights just before he moved to IMC. She is so gentle and sweet. Just the other night Wendi came over to IMC and kept him. It was so fun! Kanyon is excited for her since she's getting married in October!

This is Kathy. Kathy is very special. She was Kanyon's very first nurse. She was right there in the OR when he was born and has been with him through the ups and downs that have come since that night. She is SO smart and has been one that we have asked LOTS of questions. She is a little silly and has shared her spunk with Kanyon. She got him his very first teeny tiny thumby. I changed my first diaper with her, She moved him to his isolette, she turned off his oxygen (that was a good thing), she let Kory hold Kanyon for the first time, she has taken so many fun pictures of all that goes on during those night shifts, the list goes on and on. Kathy has been irreplaceable! Kanyon is working extra hard so that he can RUN to her at our NICU reunions. If Kathy is reading this, she knows what I'm talking about. We can't wait for that day!

This is Amanda. Another special friend. She was Jayde's very first nurse. She was there in the OR too and worked so hard with Jayde and Kanyon. She is so peppy and smart. She too works nights, so we've enjoyed visiting with her and we've been so thankful for her warmth and love for our babies. I think Kathy and Amanda have the ability to truly appreciate the progress that has been made over the last 3 months since they were there that very first second. I am so thankful for Amanda and I look forward to her being Kanyon's practitioner when he's a big boy.

This is Jody. She has been a night nurse until recently. Now she works days and confuses me! She is so gentle and patient. She was there the night we lost Jayde and that makes her very special to us. She has been very loving and helpful to all of us. Her experience is amazing! We always felt very comfortable when Jody had Kanyon at night. He was in good hands!
This is Debbie. Debbie has had Kanyon off and on the whole time. And the great thing is she's one nurse that has "gone with him" to IMC!! She's had him lots and lots lately and Kanyon is pretty fond of her! She has the sweetest voice and works so hard helping him learn to eat (and helping mom learn to feed). We love Debbie!!!

Like I said before, this is not everyone! There are others that have been so great! Helen, Ellen, Kim, Stephanie, Taz,...oh I'm afraid I'm forgetting people...I know I am. But, we just wanted to say thank you to all of them. GOD has given us grace and mercy through these hard times. We know these people are mercies sent from GOD to help us through this. Thank you girls!!! (and Jim and Dr. Chris!)

Day 87

87 days and still going! Today was a fun day for me. This week I've been able to give Kanyon his 1pm feeding with his bottle. The first few days it was pretty crummy. I spent the first day trying to figure out how to hold him upright, hold the bottle, the rag under his chin, and my fingers under his chin to keep his mouth closed, and then really you need another hand to rub his head or feet to keep him awake. Needless to say, the first time he didn't even take half of the feeding before time was up. But, I take partial responsibility!!! I have gotten a little better each day and today we were both right on! He took the whole bottle!!!! YEAH!!!! His breathing is even pretty good during the feeding too. Still has to have help every now and then, but most of the time he regulates his breathing well. His full bottle got a jumping cheer from his nurse and a bunch of kisses from mommy!!! We hope this keeps up since we can't go home until he gets it down. I forgot to ask how much he weighed today, but yesterday he was 5lbs. 6.2 oz --Not too shabby for a mirco. And another occasion to be celebrated..he outgrew an outfit!!!!!!!!!!!!!!!!!! His legs are too long!!! It was one of our tiny sleepers, but still, it's not everyday that he outgrows something!
We have another head scan tomorrow. Please keep asking for healing. We are praying and begging for the healing of his head. Ok, I'll include some pictures now!

He is still not much more than a handful to hold!
Talk about COMFY!!!!!
This picture is for one of the ladies in his life...Ava Muns..she gave Kanyon this cool new thumby. It is much smaller and much more manly since it's green not purple! Thanks Ava!

Day 84

Hello everyone! Today's weight: 5lbs 4.8 oz. Some of you have asked about length. He's almost 18 inches long. Most of his weight as you can see is in his cheeks!! :) His infection has cleared and they started a few more tests today to try and figure out the cause of the infections. For the time being he has to finish this round through IV then they are going to do maintenance antibiotics orally from now on. I"m glad because those IV's in his head don't look too comfortable. They did another head ultrasound Friday and it looks like the swelling has started again. That probably means the shunt is failing which then means he would have to get a permanent shunt. We are still praying for healing and for protection....swelling in the head is scary. Our Dr. is supposed to talk to the neurosurgeon in Dallas tomorrow and see what they say. Keep praying for that. We still want the obstruction to clear and no shunt to be needed. Right now it doesn't look like that will happen. So, if not we are kind of just hoping to go ahead and get it over with so no damage is done. On the other hand we want to keep praying for GOD to heal him and not need any shunt. Friday Kanyon had a laser eye surgery to hopefully prevent any damage to his retina. It went well and will hopefully fix the problem for good. I guess that is his update for now. We'll keep everyone posted on the head thing. Please just pray pray pray.

Is this outfit not so cute?! Cousin Avery sent it to him last week. They are looking forward to catching bugs together. That's why she gave him a bug gown!

In honor of Father's day, I"ll post these pictures: Kanyon already knows what a great dad he has-- he's already trying to be just like him. Look closely.

(Ok, so maybe Kory was copying Kanyon, but it sounds better the other way)

Snoozing with Dad on father's day

Kory is already such a great dad! Kanyon is a lucky little boy!

Day 80

YIKES! Where has this week gone?! I guess that is a good thing. We have had a very good week here. Kanyon has been busy growing and eating and I have been busy getting his room done. We started on their room before they were born thinking we were ahead of the game and would be done in plenty of time for the babies' arrival in June. Well, we've been on hold the last 3 months, but it is time to start getting it going. My UNBELIEVABLE sister in laws (and their adorable daughters) and my UNBELIEVABLE mom have been here this week working so hard helping me get things done. I once again find myself wondering what I would do without these girls (and thanking my brothers for marrying Rachel and Maurine!).

Kanyon's latest milestone is that he hit 5 lbs today!!! WOW! 5lbs 1.2 oz to be exact! YIPEE! He's taking his bottles better so they've started giving him a bottle 4 times a day instead of just 2. They are doing another head scan tomorrow to check on his head. As of Wednesday, he still had the bladder infection, but hopefully its gone by now. We are ready to figure out what is causing these things! Other than that, things are going well.

Probably the most fun thing this week has been Kanyon's VISITORS!!! Now that he is in IMC you can see him through the window. The windows aren't open very often and they won't open them unless there are parents in there, and even then you can barely see him. But, that is better than nothing! Some of his biggest fans got to see him this week. So, enjoy these pictures.

Aunt Rachel and Cousin Roselyn's first time to see Kanyon!!! Uncle Clint hasn't seen him since he was a 1 pounder, so this was WAY FUN! Kanyon even waved at them from his bed!

Church buddies The Porters, Thomas, and Corbitts. This group included Kanyon's future BFF Blake who was born only a few days after him.

Cousin Avery meets Kanyon!! Aunt Mo hasn't seen Kanyon in a while either, Kanyon made lots of funny new faces to show off for Mo and Avery!

Family reunion! Great Aunt Mary Lynn and Great Uncle Steve, Cousins Jay and Paul and CDR friend Kaylee came to say hi! Cousin Paul even got the government to be extra slow on his passport back home to Korea so he could see Kanyon! :)

Here they are looking in on him.

I think this pictures is hilarious! He's wearing PANTS!! They were huge, but it was so funny. He's such a grown up.


Keep praying! See what your prayers have done??!!!

Day 76

We've had a pretty good weekend. I guess you could say that Kanyon made another big step. He is now in intermediate care. That means he moved into a different room in the NICU unit. Honestly, we were a little sad because we were so used to those nurses, that room, and basically I'm a creature of habit, so changes throw me off. BUT..we know its "one step closer to the door home" so for that we are so thankful. Plus, we have learned that it's some of the same nurses during the day so we still see familiar faces. And we are enjoying meeting new nurses at night.

Kanyon is still off his oxygen and only getting a little boost of air when he needs it (which we're hoping is getting to be less and less often). As of today, he weighs 4lbs. 9oz. WOW! This new intermediate room that he's in has a window so people can look in and see the babies. Saturday, I was standing out there looking in while my mom in dad were in there holding him. These 2 ladies walked up and were looking at the babies. When they saw Kanyon, they said, "Oh, look at that little one over there. He's tiny!" I wanted to say "TINY??? You think that's TINY?? He's HUGE!!!!!!!!!!" But I just stood there and grinned because they thought he was cute.

As of tonight Kanyon is back on antibiotics. They did another urine culture just to check since he's had those 2 UTI's. He is "growing something else" so they are going to treat that. His Dr. is going to talk to a specialist and see if they can't figure out what's causing it. They have a couple of possibilities....some more complicated than others. Hopefully they can talk and figure it out. The good thing is is that Kanyon doesn't seem to feel bad, so it was a good thing they did the culture "just in case". Maybe that saved him from having to get sick enough to start showing symptoms before they figured it out. So, we will continue to pray for his bladder/kidneys.

Our Dr. here talked to the neurosurgeon in Dallas and he is still happy with the temporary shunt that Kanyon has. His ventricles are decreasing, so this shunt is working. We are still praying that it continues to work and that the obstruction that is causing the problem will resolve so we don't have to do a permanent shunt later.

The "H" word got mentioned this weekend (HOME). Dr. says we're "on schedule" so we might be going home by due date (ish) July 7. Of course there are lots of factors there, but that is the first time they've even talked about it! Now we can start praying that we know what to do with a baby once he's home!!!

As for feeding, Kanyon has a new record (other than the first time when he was unbelievable and took the whole thing)....today he took 32 out of 42 cc's from his bottle!!! Hopefully he's catching on.

Well, I guess this was kind of a boring, "medically" (yes, I make up words) update, but I CAN'T POST PICTURES EVERY TIME OK!!!! Thank you for your prayers. Keep them going. Your prayers are not only blessing Kanyon's health, but they sure have brought peace and encouragement to me and Kory.

Day 73

For today's update, all you have to do is look at the pictures:


Notice anything?

Something is missing, huh?

This one's a give-a-way! Now do you know?

NO OXYGEN!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yep! That's right. Kanyon is using his big boy lungs now! YIPEE! They had him turned off all night last night and decided to go ahead and take out his cannula this morning. That little white tube is his feeding tube. He's done great all day. They have to give him a little help (with this thing they stick by his face) when he's eating, but other than that, the man is on his own! We hope this lasts, wouldn't that be great! He weighed 4.4 today, so we're gaining a little. He's kind of been a slow grower this week. Bottle feeding isn't fantastic, but he's getting practice 2 times a day. Hopefully that will click soon. We are headed back to the hospital now, but I wanted to post BEFORE midnight tonight. We love seeing that sweet face without tubes and tape!

Day 72

Kanyon has had a couple more good days! The bottle feeding is going OK. They are giving him a bottle 2 times a day. He hasn't taken his full feed again since the first time, but that's OK...he's still learning. When we left tonight he was on nothing...breathing totally on his own! They were going to see how long he could go like that. We were proud..that's good practice! Not much new news, I just wanted to post some too cute pictures.


Here he is all buried in his nest. Being swallowed up by his clothes! Comfy and sleepy.

I'm not sure, but I think he's winking and waving at the pretty ladies in the NICU with him! Tracie, this may be a high five for you! :)

"Hello blog friends!!"

OK, I know I'm his mom and all, but is this not SO CUTE! He's been so awake and alert these last couple of days. Making funny faces looking all around.

This is our family on our 3rd anniversary. WOW. Those vows have meant more to me in the last 2 1/2 months than I ever thought possible. Kory is the best. There is no way I could do this without him.

"OK MOM..enough is enough!!!" As you can see, he threw in an eye roll. Attitude!

Day 70

BIG DAY TODAY!!! Are you ready for this??? Kanyon took his first bottle!!!!!!!!!! WOHOO!!! I wasn't expecting this until at least the end of this week!! He gets 30 minutes to "try" and whatever he doesn't drink will be put in his tube...well, he ate all 40 cc's! from the bottle. Nurse Melissa was so great and Kanyon was a champ. They said we can expect him to "forget" how to do this at some point and have to "remember", but we'll celebrate today's success and worry about "forgetting" later. Sucking, swallowing, AND breathing is HARD WORK! For now they'll just do one bottle feed per day and work their way up. Here are the pics of this monumental occasion.

Melissa and Kanyon..at this point, he's wondering what he's supposed to do with all that sweet yummy stuff in his mouth! Swallow? What is that?

With one first comes another...his first BURP!!! And it was bigger than you'd think!

We can't expect him to open his eyes during all of this...TOO MUCH WORK!

Not sure if he's yawning from exhaustion or screaming with pride and excitement!

"Yeah, that's right..empty bottle...who says I can't do 3 things at once?!"

Kanyon's breathing is going well today too. He's on minimal support and spent most of the day on room air! We pray he keeps it up. We hope he's getting ready to take off, but we're also still being very patient..we know it will still be up and down. We are very proud of him today!

Day 69

Sorry it has been a few days...we've been running like crazy this weekend. We had sweet friends get married..congrats to the newlyweds. Kanyon hated to miss the parties and meeting so many people that love him, but he still has unfinished business in his NICU! He's done well this weekend. They've changed/added some medications and I think that has helped. He's had very few "spells" so that is good. They are working on getting that oxygen level down to room air...he lets them get close, but he can't quite keep it all the way down. Bottle feeding is in the near future..not sure exactly when, but maybe within the next week or 2. We'll pray that goes well. Not much new, so I'll let you see some pics from the weekend.

Kanyon's first outfit! Thanks Cliff and Maggie! It was perfect. Its from some preemie website that makes clothes for NICU babies...what size is it? TINY! That is the name of the size..how cute is that?! The size smaller was MICRO and we're SOOO past that!

A visit from his Texas grandparents

This picture is for Martha..she gave him this set. The pj's fit perfect (we were a little scared his feet were gonna be too big, but they weren't). His bed has jungle animal blankets today, so he even matched his bed. See...he's already got style!

Remember this picture from the first few days they were born? I couldn't get the picture to download, so you'll have to go back and look at one of the very first posts. Kanyon had Kory's wedding ring on like a bracelet (and it was very loose). Tonight we could only get 3 fingers in there!

It is already hard to believe that ever fit on his wrist. I can't imagine what it will be like to look at him when he's 16 years old and know that ring once fit on that very same wrist.

Just a side note..our NICU is very full right now. Just keep those little babies in your prayers (and the nurses who are working like crazy). There is just so much going on. One particularly heavy on our hearts is a new 25 week-er. He was born on Saturday and is doing good so far. I just have such a heavy heart for his parents and for him. I know nothing about him or his parents, but I do know they need prayers. I feel like Kanyon needs to go talk to him and give him some advice. :)