Ten Months, Swallow Study, and Surgeon Visit

Wow! I cannot believe Cannon turned 10 months today. It depends on what part of the past 10 months I am thinking about at the moment as to whether it seems like it went by fast or slow. It's been quite a roller coaster ride since Cannon decided to make his appearance but I can't imagine where our lives would be without this little boy.
Yesterday we made another trip to ACH. Cannon's surgeon wanted him to have a swallow study so we could see how his esophagus was looking. It still looked exactly the same as the very first one that he had seven days after his repair surgery. This is fantastic news. There is only the slightest narrowing at the surgery site that you really have to look for. His surgeon did a beautiful job repairing him. We could not be more appreciative. We are all so pleased with this and still have hopes that he will never have any narrowing and possibly never need a dilation. His tummy is still healing from his g tube site getting closed up on dec 19, 2011. A couple of weeks ago I discovered there was still a stitch just below the surface of his skin that had not dissolved and was keeping the site red and irritated. Dr. Maxson looked at it yesterday and said it should dissolve but when the scab comes off after his baths to put a little peroxide on it to help dissolve it. So not a big deal there. He also said that we have no follow up appointments with him for 2 years and will only see us when we call to come get something removed from his esophagus (I.e. Food, or whatever else a toddler can think of to put in his mouth) as children with EA/TEF tend to get things stuck quite a bit. I've read that some parents have had to take their kids in to get a couple pennies removed or a sticker. So we will see what it'll be with Cannon someday.
After his appointments we took him downtown to see my sister at work. She works at the Old State House Museum. It's so neat there. She had a blast getting to see Cannon and he went on his very first tour (although a quick tour) of the museum. He took it all in! My brother works right across the street from her and was able to walk over for a little bit to see us. And we also had a little photo shoot outside the museum and by Lady Baxter (the old cannon outside the museum). We have decided we will have Cannon take pictures by the cannon each time we can go see Brooke at work. Should be some fun pictures to see and take over the years. Haha!
Just as a side note....I'm writing this blog from my phone and it seems to be showing the pictures I'm adding in a different order than what I chose them in. Not sure why and not sure how to correct it. Oh well. Some are from the visit to Brooke at the museum and the others are just ones I like. And yes the sign says please do not sit on cannon. Haha! Brooke sent me a picture of this sign while Cannon was still in the NICU. I wanted to get a print out of it and tape it to his isolette as a joke but never got around to it. I guess instead we will just have to take his picture next to the sign as he grows up! Haha!
Until next time...
Love,
Christian, Trent, and Cannon

Goodbye 2011....Hello 2012!

Today is the last day of 2011! YAY! Maybe our 2012 won’t be quite as stressful as our 2011 year. A little recap of this year. In January, we lost my grandmother (my dad’s mom) on the same day that my dachshund hurt her back and we had to take her to the vet. In March, our son arrived 2.5 months early, very small, and needing a major surgery. He spent 86 days in the NICU at ACH and then came home for 3 weeks and got a little more sick and had to spend another 12 days in ACH. We have learned a “new normal” in our life. Things got a little easier and a little less stressful. The end of September Cannon’s g tube came out of his tummy. In December because the hole had not quite healed up the way it should have he had surgery to close it and another small surgery at the same time. And some firsts….Halloween, Thanksgiving, and Christmas! A death, a hurt dog, a birth, and 4 surgeries later I’d say our family is ready for a New Year and hopefully a GREAT one at that!

I meant to update after Thanksgiving, but then several days went by…Then a few weeks… So I decided to wait until after Christmas……So now here I am on the last day of the year. Nothing like procrastination! Maybe this won’t be too long of a blog.

Trent was off work for Thanksgiving and we decided to spend it in Stuttgart as we do most years. Though this year we actually got together and cooked a big meal. Normally we are just back and forth to aunts and cousins houses while we are there but no big meals together. We had a blast doing this and I kind of hope we do it again next year! (Hint hint Sarah!!!!) It was the first time Cannon and Kennedy had met each other and that was so fun to see those two cousins interact. They loved each other so much! Kennedy calls Cannon “her son”. I guess for now we will let her. She’s so sweet and so good with him. There was only one moment where we saw a very jealous look on her face, but for 5 years she’s been the center of attention. She constantly tells me what a cute baby I have and kisses him on the head and sings to him. It’s adorable!

We spent the weekend before Christmas in Stuttgart again. This was the first time in several years that Trent was off work and able to go with me. My sister had told me that she and Kennedy would not be able to come this year. However, they were there to surprise us when we arrived! I was so excited! The only downfall was that since Sister had told me they wouldn’t be there I had not brought Kennedy’s presents. Imagine me trying to explain to a 5 year old why I didn’t have a present for her to open! Of course I also told her I would put it in the mail the following Monday, and I still haven’t done that! Sorry Kennedy! Cannon had a blast during this Christmas celebration and ate a TON of mashed potatoes and gravy (yep…he got that from me!). He ripped open presents and played so hard!

My sister and my niece Kennedy

Trent and Cannon

My sister and me

Cannon and Trent

Cannon, Trent, and Aunt Dirt!

Cannon!

My hot natured child (yeah we had to take his shirt off!) and his Aunt Dirt!

Me and my little boy!

We had Christmas at Trent’s parent’s with his family on Christmas Eve as we always do. We had a great time and enjoyed being with all of the kids and family there. There was lots of food, noisy kids, paper tearing, picture taking, and finally Cannon crashed before we could leave! We got home and put him to bed and then the next morning when he woke up…….SANTA HAD COME TO SEE CANNON!! Woohoo!!  I failed to get any good pictures at Trent's family's Christmas.  These were the only two decent ones.  Sorry to all the McCone's.  There is a really cute picture of Cannon and his Aunt Melissa when we first arrived and he was wearing his 'coon skin hat she picked out for him last year, but it's on my phone.  Would you believe that of all the space I had on my laptop I have run out of room and cannot put anymore pictures on my laptop until I clean it up.  Haha!  So these will have to do for now!

Cannon and Trent's parent's on Christmas Eve.

Uncle Alan and Aunt Melissa

We did Santa present opening with Cannon when we got up (all of those pictures are on my phone and I can't put them on my laptop right now!  Sorry!). I had to wake him up at 8:45 because I was so excited and couldn’t stand to wait any longer to bring him in the living room to see what Santa had left him! He had a blast opening presents and playing! Then later that afternoon we did snacky foods with my dad’s side of the family. It’s always an interesting time with a whole group of Malloy attitudes in the house and once again it was interesting and fun as always!

Aunt Brooke wanted some snuggle time, so she got it!

Cannon had to help Uncle Carter open his presents!

Aunt Jenny, Uncle Carter, Cannon, Trent, Me, "Big" Grandaddy (my Grandaddy), and Aunt Brooke!

Tonight is New Year’s Eve. Trent is working until 10pm. Cannon and I are here at the house hanging out, fixing bottles, changing diapers, and maybe I will let him have a little apple juice!

Cannon’s Milestones: He can sit up without toppling. We can stand him up by the chair in his room and he can hold on and stand there for a couple of minutes. Dec. 13 he cut his first tooth. Dec. 31 (today!) he cut his second tooth! He CAN roll over in both directions but he could really care less to do it! He can sit up on all 4’s if we put him like that but he will not crawl! He is working on using a sippy cup, although he wants us to hold the cup if he wants a drink. He has zero desire to drink from the sippy cup and hold it himself. Kind of like he has no desire to hold his bottle on his own to drink….he wants us to do it! He still loves to jump in his jumperoo! He loves to hear his daddy call ducks on the duck call. He thinks that is the most hilarious thing ever. He laughs so hard at it!

We wish everyone a Happy New Year!  And may everyone have a very blessed 2012!

Love,
Christian, Trent, and Cannon McCone

First Halloween, Meeting Family, and Dr. Follow Ups......

Well, Cannon survived his first Halloween! The last couple of years I (along with Trent if he’s not at work) have spent Halloween evening over at Alan and Melissa’s (Trent’s brother and his wife) house. They have the best neighborhood for trick or treaters. Normally we get to pass out candy over there (and Melissa’s friend Paula seems to think there is a bribe going on there since we manage to be rooked into it each year…HAHA!). This year Alan scared all the kids in the neighborhood while Trent passed out candy and I wrangled our little dr. in the house! Yes, that’s right Cannon was dressed up as a dr. for his first Halloween and he got to wear his very own stethoscope that was his in the NICU! He of course went to have his weekly weight check that day and was all dressed up to see everyone at the office that day! 

Trent and Dr. Itty Bitty McCone going to trick or treat and my Grandaddy's house.
(And yes I was the cool mom that let her 7 month old have his first lick of a reese's cup!)

Dr. Itty Bitty McCone and his Uncle Alan

Dr. Malloy and Dr. Itty Bitty McCone

Since then Cannon and I made our first trip out of town alone together to go to my mom’s house for a long weekend. We took him over to my aunt Pam’s house on Saturday to see some of my mom’s side of the family and meet a few of our close family friends. My friend Megan brought her little girl Kynslee (aka- Cannon’s future girlfriend) to meet Cannon. Megan and I got to share all the ups and downs and happy and sad moments of our pregnancies together. We checked in with each other daily and discussed our dr. appointments and ultrasounds. She was there to see me when I was in the hospital and came to meet Cannon in the NICU on the same day that she was finding out either good or bad news about her own baby via ultrasound (the situation turned out GOOD! Praise the Lord). So basically we shared all and helped each other through everything! I think we both feel like we couldn’t have survived it without one another. We are now sharing all things good and bad about motherhood and having our babies home and HEALTHY! Cannon also got to meet his cousin Taylor (my cousin David’s little girl). Overall it was a fun and very long day for both Cannon and myself.

This is my Granny (my mom's mother) with Cannon and Taylor.

Myself, Cannon, Kynslee, and Megan

Cannon has that "oops I'm busted" look on his face.  Almost as if he's saying "Uh I'm sorry Mr. Tyler.  I won't ever touch Kynslee's arm ever again!"

The kids really liked each other and are looking forward to their date to the zoo next spring.

Yesterday we made a trip to ACH. It was follow up time at the Liver clinic and the Medical Home clinic. First off was our visit with the Liver Dr. He is a new dr. at ACH and very nice. He was so pleased with how Cannon looked and his growth and how he has NO symptoms of Liver problems that he didn’t even want to bother with doing lab work to check it! That was awesome news! He wants Cannon to see the nurse practitioner at the G.I. clinic in 3 months to make sure his reflux is ok and then the Liver Dr. will see Cannon again in 6 months about his liver functions and possibly do lab work then. He also said he does NOT think that Cannon will have liver function problems again. He feels like the liver has repaired itself completely and will not cause any issues down the road. This was FANTASIC news! Then it was on to see Dr. Lyle (Cannon’s neonatologist that follows his development) at the Medical Home clinic. Dr. Lyle was very pleased with Cannon’s development and his growth. He thought that Cannon is coming along perfectly and doing all the right things and has all the right responses to him. He is pleased to see all the new things Cannon is doing and responding to and how well he is eating. We discussed foods that we need to be careful with as Cannon gets teeth and starts food that he will need to chew that could possibly get caught in his esophagus where his stricture (surgery site) is. He told us that we will need to always let him take his time eating so he can chew everything very well and to not tell him things like “Cannon hurry up and eat so you can go outside and play”. He also said that anytime we are traveling and have to eat on the road to not let him eat while he’s in his car seat because of where the 5 point harness hits on the chest could put pressure on the esophagus and cause him to choke. So Dr. Lyle definitely gave us some things to think about and be cautious of. We also discussed Cannon ever having to have his esophagus dilated. We know it will always be something we need to watch for signs of but he feels like since he’s not ever had to have a dilation so far that he may possibly not ever need one. But we will always look for signs of needing to be dilated as it’s not completely ruled out that he would not ever need one. Still that was good to hear. Dr. Lyle said he wants to see Cannon again in 3 months and as long as he feels Cannon’s development is where it should be and that Trent and I do not have concerns he will release Cannon’s development to his primary care physician. That was bittersweet news to hear. We think Dr. Lyle is great and we would love to continue seeing him because after all he’s known Cannon since he was in the NICU, but it was nice to hear him say that because that means Cannon is doing great developmentally and doesn’t need to be as closely monitored by a more specialized dr.

Cannon is starting to sit a little bit on his own when we sit him on the floor. He topples over a lot still but we know it takes time. He will get there. He looks around at all sights and surprises himself when he gets loud! He laughs so much and is the happiest baby I think I’ve ever seen because he very rarely cries. In the last couple of days he’s started opening his mouth and leaning towards his daddy to kiss his cheek. However he will not kiss mommy’s cheek yet. It definitely makes me jealous! Haha! But that’s just the mommy in me thinking “Cannon I’m around you the most so why don’t you want to kiss my cheek?”

Wearing his daddy's razorback hat....and looks like he's wearing a little bit of his lunch on his shirt....oops!

Love,
Christian, Trent, and Cannon

Becoming Hermits

I just got word from Cannon's dr at ACH that he will not qualify for the RSV shots. We cannot decide if this is good or bad. It's good because it means Cannon is healthy! It's bad because it would make this sick season a little easier on him and not as stressful on Trent and myself. Basically, as if we didn't keep him home and try not to let him be around too many people enough already it's about to be even worse! We will now be known as Hermits! We will all be going very stir crazy but we also have to do what is best for Cannon and his health! Please pray for Cannon and that he can get thru this sick season without getting sick and especially not get RSV.
On a good note he is growing so well and changing so much. He has been sleeping with his mattress elevated due to his reflux and we have been lowering it a little at a time. Last night was his first night to have his mattress completely flat. He did great! He slept so great and every time I looked in his crib on him he was sprawled out! So cute! He went from looking huge in the little nest he slept in when his mattress was elevated to looking small(ish) in the crib with no nest. I am hoping that over the next couple of weeks he continues to sleep well laying flat so that I can get back in my own bed in my own room!
Well, we will see all of our friends and family next spring! Haha! It cannot get here fast enough!
Love,
Christian, Trent, and Cannon

What a blessing!!!

Praising God this morning! I just got the best phone call! I wasn't expecting my dad to call with the news he had for me....I figured when I saw his name on my phone that he was calling to make sure I was ok because it was a little bit of a rough day yesterday. But that wasn't it at all. He called to tell me that Cannon's lab results were back and for the very first time ever the results were all COMPLETELY NORMAL!!!!! His liver is functioning perfectly! This is awesome news! The good Lord has definitely watched over Cannon and made sure that this little boys liver was repaired!
Also his g tube site has healed perfectly and is not leaking at all. The only problem there is I'm still looking at that stupid tube every day trying to decide what to do with it. Throw it away or keep it because it was a part of Cannon for so long! Haha! A couple people have said to put it in his baby book!
Cannon also LOVES oatmeal with bananas. He is really liking carrots and I don't know why because I think they taste kind of yucky! He still likes his pears and applesauce. He does not like green beans and we finally gave up on any kind of rice cereal because to get him to take it we had to put so many pears in it we might as well have been giving him plain pears!

Love,
Christian, Trent, and Cannon

EIGHT hours and rolling over!

EEEEKKKK!!!  What a big day today is!!! Trent and I are a couple of proud parents!
As Cannon is getting a little older we have been working towards sleeping all the way through the night without having to take a bottle. He was on a very strict 3 hour schedule. Then slowly we were allowed to let him go 4 hours. Then 5 hours. It took us a while to get him to go 6 hours. Then he’d only go 6 ½ hours! I thought we’d NEVER make it a 7 hour stretch! Then finally one night he did it! Last night he did his first EIGHT hour stretch! YES, EIGHT! I was so excited! I woke up at 4am (which would have been his 7 hour mark for wanting to get up to eat) and waited like 30 mins on him to wake up to eat. I guess I fell back asleep because he started crying at 5am wanting to eat! When I saw 5 on the clock I could have done my happy dance, had I thought I would not fall over!
As if that wasn’t enough for us to celebrate he was playing on his tummy in the floor a while ago when suddenly he ROLLED OVER onto his back!!!!! He has been trying so hard for the last several days to do it and he’d get on his side and get tired and fall back onto his tummy. NOT TODAY! We are so excited! He’s just hitting these milestones and passing them by! I’m going to blink soon and he’ll be toddling all over the house! I guess Trent and I need to make a trip to the store to find baby proofing stuff because I think this curious kid is going to be into EVERYTHING! Time to start cleaning up I guess. Ha-ha!
I just wanted to share these exciting little things!
Love,
Christian, Trent, and Cannon

Cannon rolling from his tummy to his back!

Six months old and the Gastric Tube is OUT!

So in my last post I was saying that the G.I. Dr. wanted us to have Cannon keep his g tube through the winter in case he got sick and did not want to eat we could still give him his nourishment. So at that point we made an appt. with the surgeon to get a new g tube placed because the one he had was not very stable. It was able to move around quite a bit and you couldn’t tell if it was further in his tummy than it was supposed to be. So the next size tube he could get was more stable. It had something on the inside and the outside that would keep it more in place and this one would get us through the sick season then he could get it out all together! We arrived at the surgeons office and quite frankly he was really annoyed that Cannon even still had a tube! He said basically that Cannon was nearly 6 months old and had not used the tube since he was in the NICU and there was no reason that if this child is eating and taking all his meds orally that he should keep a tube. He also said we need to treat this child like a normal child and normal children don’t run around with tubes for the “just in case” moments and that if Cannon were to get very sick and wouldn’t eat he’d be admitted to the hospital and get a feeding tube until he’d eat again. Also this is much less invasive! So his plan was to call the G.I. Dr. and tell him that he thinks it should be out! The nurse practitioner from the G.I. clinic called Tuesday about mid morning after our appt. on Monday at the surgery clinic and left me a voicemail just saying to call her back. I tried calling back an hour later, and a day later, and two days later and still no call back. Thursday night after Cannon’s bath Trent and I noticed the tube was leaking around the skin. So we tried to keep it in until we could at least hear what the nurse practitioner at the G.I. clinic said before we had it taken out on Friday morning. Well, I had a long night of changing gauze and tape and clothes that had been soaked through rather quickly and as I was changing it Friday morning at 7am the tube just came out around the gauze and tape! However, the little mushroom cap that kept it stable on the inside did NOT come out on the end of the tube. This would be the cause of the leaking because the tube broke! No worries though because Cannon has passed the mushroom cap part of the tube and the hole where the tube was is healing very nicely. And no more leaking! So, on the day that Cannon turned SIX MONTHS OLD, he got his very last tube out! We couldn’t be happier for him! We have decided after all this time of changing a diaper and then tucking the end of a tube in the strap part of the diaper that it’s weird to not do it. Out of habit I keep trying to grab a tube and stick it in there. I guess one day I will forget all about that! I think even Cannon knows it is not there anymore and is so happy about it!

 We went shopping for Cannon some new winter clothes last weekend. We didn’t have any long sleeved stuff for him because once he was born so early I just wasn’t sure what size to buy. I’m glad I held off because I would have bought all of the wrong sizes! The few things I had bought recently I had to take back because I bought the wrong size! Fortunately I was able to find the exact same thing in the right size! We got him a lot of really cute stuff! I think I’m going to have to tell the G.I. Dr. they will have to see us more than once a month because he’s got some really cute outfits to wear and nowhere to wear them to since sick season is about to hit and he’s not supposed to be around people! Ha-ha!

This is the first picture I took of Cannon when I first arrived to meet him after I got out of the hospital.  He already had his g tube in his tummy.  I don't have a picture of him without his tube.  Since the tube came out it has had a bandage over the site.

Just one of the shirts we bought while shopping last weekend!

Love,

Christian, Trent, and Cannon

Liver Functions and Solid Foods!

Hey there again! Trent is off work today and Cannon is asleep in his arms, so this is my chance to write a quick blog!
Well, Cannon has been out of the hospital (his 2^nd stay) for almost 2 months now. He’s been home and doing great. He is continuing to look better as far as his liver function levels go. He doesn’t look near as jaundice as he did. He had a Dr. appt. with his G.I. Dr at ACH on Sept. 22. They all thought he looked GREAT! His lab work also showed that his liver is doing great! As I had suspected, but didn’t want to get too excited over in case it wasn’t doing as well as I had thought! His direct Bilirubin had come down to almost normal. It is .6 (normal being from 0-.4) This was a big change from his last appt. His total Bilirubin is 1.0 and is in the normal range! His liver is functioning well and repairing itself! God is answering prayers!
At his last G.I. Dr. appt. we learned that they wanted him to keep his g tube until the spring. We were hoping they would let him get it out, but they want him to have it during the winter just in case he gets sick and doesn’t want to eat so he can still get his nourishment. As bummed as we were that he couldn’t get it out, we definitely agree with the Dr's. And feel this is a wise thing to do. He is after all high risk for illness. Please pray that this will be an easy winter for him and that he won’t get sick!
He is continuing to gain weight wonderfully! His dietitian has finally decided to let us let Cannon sleep as long as he wants in the night. Well, as long as he does not want to sleep like 10 or 12 hours without eating. As of now he’s doing about a 7 hour stretch at night without eating. So we are getting a little bit more rest. However, I am still up and down with him all night long even though he’s not actually up to take a bottle. He has to burp often due to his reflux and T.E. Fistula, so I am now sleeping in his room with him. So when I hear him squirming around in his bed I have to get up to burp him to keep him from refluxing milk up through his nose. So I have a lot of long nights of getting up and down to burp him. The nice thing right now is he doesn’t really wake up so he goes right back to sleep when I lay him down! (Knock on wood that is how it will continue to go until his reflux gets better!)
We were promised by his dietitian and G.I. Dr. that when his direct Bilirubin was at 2.0 or below he’d get to go on a different formula. One that tastes BETTER! FINALLY! Poor child has been drinking some yucky stuff mixed with his milk since his last hospital stay to help him put on weight. So we were excited to try out his new formula yesterday! He LOVES it. We went from fighting on some of his bottles with him spitting part of it out to he isn’t hardly dribbling a bit of it out of the side of his mouth! Ha-ha! I hated having to give him that other stuff, but I had to get some weight on that kid! Anyways, he’s not looking back! Ha-ha! The unfortunate thing is we had just gotten 6 or 7 cans of his old formula! I don’t think he will finish those off at this point! If anybody knows anyone whose child is on Pregestimil please let me know.
As of yesterday Cannon started on solid foods! This is a major milestone for him because the Dr's. Keep telling us that as he is able to take more solid foods his reflux will get better! He let us know VERY quickly that he HATES plain rice cereal! So I mixed some pears with it and he LOVED it! He also loves plain pears! It’s really funny to see him try to take food off a spoon. He’s a little used to a spoon because that’s how I give him his prevacid, but the new texture is confusing him a little bit. But he’s acting very excited about these new foods he’s getting to try! I am so excited to see him enjoying them and am praying that as he gets more his reflux truly will get better!
He is quickly outgrowing his newborn clothes and some of his 0-3 month clothes he has been able to wear! I know, I know…We have a 6 month old that is still wearing newborn clothes?!?! But hey, he’s come a long way. First he started out not even getting to wear clothes. Then he made it to preemie and stayed in that size for a while! Now he’s stayed in newborn size for a while too! But now that he’s gaining weight better it seems I looked at a few of those 0-3 month outfits and thought “oh those would be huge on him!” Now I’ve looked up and had to dress him in all of them this week because they are getting tight on him and he hadn’t even worn them yet! Ha-ha!
Cannon is finally letting us put him down some! In my last blog I wrote that he wanted to be held all the time. While he still prefers to be held, he is letting us put him in his swing and bouncy seat a little more. He does not really want to take naps anywhere except on someone! Which is fine by me because most of those naps are taken on me, and we all know I need a nap too! Like I said before, I’m up and down all night. And yes, that is making me SUPER exhausted! So I do not mind the extra nap I get when Cannon needs to snuggle up on me in the recliner!


Just loved how his eyes looked here.



Supporting those Hogs!



Talking to my toy!




This look makes me think that I'm going to have my hands really full!




So my dad decided to buy a convertible while Cannon was still in the NICU...This was Cannon's first time to go riding with his Grandaddy!




Rockin' my sunglasses!




Love this picture!  He's so cute!




This picture just made me smile.  His faces crack me up!




Talking to my mom and dad while strolling around the block!

 Love,
Christian, Trent, and Cannon

HOME!!!!!!!!!!!!

Ok, it’s been a little while. Once again! OF COURSE! And I can’t say it will get any better because when I’m home alone all day with this little boy of ours it’s hard to get anything done, let alone sit down at the computer to write a blog!
So, as it already says WE ARE ALL HOME TOGETHER AS A FAMILY! FINALLY!!!!!!! When I wrote the last blog I mentioned that we were hoping Cannon would get out of the hospital within the next couple of weeks. Well, it happened. We finally got to bring our special guy home on June 24, 2011. What a special day. We’ve had some pretty crazy times! Cannon had a rough time of it for a couple of weeks when we got home. I’m not going to go into detail because it was so scary and upsetting and I just don’t feel like recounting it all! I want to forget it. Honestly, I was looking for the returns department at the hospital so they could fix him again and then send him home. But when the times were going smoothly it was great. It was so wonderful to finally have this child home.
So fast forward 3 weeks. We returned to ACH to do Cannon’s follow up appointments. I had been in close contact with one of the dr’s nurses and I had told her a few days before our appt. that I thought Cannon’s jaundice had worsened. Well, I was correct. We left the first appt. with the neonatologist who had said he didn’t like how jaundice Cannon looked and headed to the appt. with the surgeon to hopefully get his g tube out. Well, the dr. had called the surgeon and said he needed Cannon admitted to the hospital to start running tests because in the time it took them to run his lab and us get to the surgeons office they had found out through the lab work that his jaundice level had in fact worsened. And quite a bit! So back into the hospital we go (for what ended up being a 12 day stay!). Of course, he could not return to the NICU where he had 5 primary nurses. Ugh. I was NOT happy about this even though I knew it before we got there. I did not like the new floor we were on, although I eventually adjusted. They ran several tests and scans and finally decided to do a liver biopsy. It was incredibly scary going through all of this and seeing the “laundry list” of issues that can go on with the liver and wondering which one of all these things could be going on with Cannon. We finally have all the results back from the liver biopsy and everything is normal. They determined what he had is TPN cholestasis. This is due to him being on TPN and lipids for such a long time and at such high doses before he was able to have his repair. We knew from the beginning he would have some liver damage from this, but unfortunately it was necessary for him to grow to have his surgery. So they have him on meds for that and it is very slowly getting better. We are praying that over the next few months everything will normalize on his lab work.
Also while he was in the hospital he was dealing with not gaining weight. While we were home the first time home health was coming over to weigh him each week. On their scale he was showing a good weight gain. So you can imagine our shock when we got to the dr. at ACH to find out that he had only put on ONE OUNCE in the little over 3 weeks that we had be home!!! Trent and I were so upset. I asked the dr’s. if this was something I had done to him because I had been feeding him the amount they told me to feed him and increased the amount each week like they had told me. I felt like a horrible mother! They reassured me that it wasn’t my fault, but of course as any mom would I still felt like it was something I had done. So now the dr’s. and dietitian have him on some formula mixed with milk that is for babies with fat malabsorption problems. He is gaining weight wonderfully now! This weight gain issue could be secondary to the liver issues he’s having. So we are praying that as his liver gets better his weight gain will get better too. Right now they still have us waking him in the middle of the night to feed him. He is on a 2.5-3 hour feeding schedule during the day and eats every 4 hours at night. This kid wants to sleep through the night, but he has to be able to take more volume during the day and keep up his weight before the dr’s will let him start sleeping through the night without feeding. We are all exhausted from this night schedule! Haha! But it will get better with time and we want to do what is best for Cannon! So please continue to pray for God’s healing hand to be on Cannon and make him better.
On a lighter note, it has been so fun to watch Cannon as he has become much more alert. He has the biggest and brightest smile. He “talks” to us all the time! His little faces are so funny to watch. He is SO SPOILED ROTTEN! He wants to be held ALL the time! I rarely get much done. (Like this blog that I started WEEKS ago!) But that’s all ok because we love being entertained by this kiddo! He’s the most adorable thing Trent and I have ever seen! Now with all that said, I must admit I’m going a little stir crazy in this house! Since Cannon isn’t supposed to really be exposed to people and all we stay in as much as possible. I think it’s kind of wearing on all of us. And we are supposed to not have him around people as much as possible and this will last all the way through the “sick season” which will be around March! UGH! We just can’t risk him getting sick, but it is going to be a LONG winter staying at the house! So also pray I don’t go completely off my rocker! Haha!
So like I said it’s taken me weeks to write this blog. I’m not deleting everything I’ve already written, but Cannon did have his checkup with his G.I. dr. and with the neonatologist that saw him in the NICU. Both check ups went well. The appt. with the G.I. dr. revealed that his jaundice level is going down! This was fantastic news. The liver is trying to repair itself and is doing well at that. At his next appt. in a month we will discuss introducing solid foods to his diet. Also, as his jaundice level continues to go down he may get to come off his formula he’s on now with all the extra stuff to help him absorb fat and onto a regular formula along with milk. At the neonatology dr. appt. he said that Cannon is doing great for his “adjusted” age and physically and mentally developing wonderfully! He is strong physically and strong willed. He had all the right responses to the dr. and he said that his voice is strong and doesn’t sound raspy or anything from his repair. This is all wonderful news!
Thank you all so much for all the prayers for Cannon. Maybe it won’t take me so long to do a blog next time. No pictures this time. I have a ton, but haven’t uploaded them and before it takes me another 3 weeks to post this blog I’m just going to post it and do pictures later! Haha!
Love,
Christian, Trent, and Cannon

The ups and downs of learning the bottle and hopes of going home!



"See me in my scooter outfit?  And yes I can hold my paci!"

Yes, I like this picture of Cannon and Trent, but I also want to point out the picture hanging on his bed.  That is from big cousin Sydney and it says "Kennon is the best baby boy I ever saw in my hole intir life!"  So she spelled his name wrong (her mom will correct her one day, but we both decided we didn't have to heart to tell her now and she was pretty close since she guessed on her own how to spell it!)  And yes, I will show her little brother Carson this picture one day!  haha!  Too sweet!  Thank you Sydney for Cannon's picture...He has enjoyed it being in his crib!

He can hold the paci in his mouth, and looks like can knock it out of there on his own too!

Sound asleep on his daddy's chest!

Me and Cannon in the nicu!  I am so tired of having to scrub in and put on a gown to see my child!  Another thing to look forward to when we get to go home!

Poor guys!  Trent was going on about 28-29 hours of no sleep at the point I think!

This is the first outfit we bought for Cannon when we found out he was a boy!  I just thought I wanted a girl....Was I wrong or what!  I can't imagine my life without this little guy!  He's amazing!

Well, that's all I have for now!

Love,

Christian

Figuring out the bottle has been a little bit of a challenge for Cannon. We knew it would be, but were still hopeful that he'd just take right to it. Now it seems by my last post that I've told a little bit of a story because I said he was doing great with the bottle. That's true and untrue so let me explain. It is true that he was doing great with his bottle at the time I wrote that blog. He was getting very small amounts and he had just started on the bottle and had only had surgery 7 days before his first bottle. So yes, considering all of that we thought he was doing great! However, a few days into it he just was not really wanting to take the bottle, he was gagging on the milk, and would freak out everytime milk went into his mouth. His latch onto the bottle was great and he could suck on the bottle (because remember...he was great with his paci!) but when the milk would come out he would get this shocked look and start gagging and spit it all out. Poor little thing! So we finally had occupational therapy come in to work with him and see if they could figure out what was going on. Their idea was to lay him on his side! Call me dumb, but I never thought that laying a baby on his side to let him eat would make the milk flow slow down to where it wouldn't choke him! No wonder he was gagging....It was too fast! So we did that for a little while and he ate better, but still not the best. The drs. had us try a thickener to see if he needed a little more substance to make it go down easier and stay down since he has reflux, but he HATED that. He immediately spit up the little bit he took! After that incident on the next bottle it was like the light bulb came on! He was able to sit back up to eat and he suddenly had the suck, swallow, breathe of bottle feeding down! This "new great trick" of his started on Thursday. He has been doing amazing since then! I didn't want to get too excited over his first few successful bottles because I kept thinking he'd revert back or that it was just a fluke. But here we are on Sunday night and he's doing wonderful. Thursday was the first time he took his bottle great and then he started showing all the signs of really wanting to eat. He'd wake up crying and looking for his bottle. He'd latch on perfectly and a few times he's sucked down the whole bottle while I've been blabbing to his nurse before I even had the chance to stop him mid way through to burp him! It's been so exciting to see all these wonderful changes over the last few days! He went from not eating at all, to eating but fighting it and not really sure about it, to wanting to eat and getting upset that his bottle is done with and having to settle for his paci! Unfortunately for Trent the light bulb came on for Cannon right after Trent left to go back home for work this week! He has only been hearing how wonderful Cannon is doing! Cannon and I are ready for him to be back up this Thursday so Cannon can show his daddy how awesome he is at this feeding thing! He's still only taking 4-5 bottles a day. But before that we had to back him down from 3-4 bottles a day to only 2-3 a day. I was so disappointed because it was a step back, but it quickly turned around! He's also only taking about 27 mLs at a time and still getting feeds through his g tube! His regular dr. will be back from vacation tomorrow so I am very excited to see what he will have in mind to do next with Cannon as far as feeds go. They have been "scrunching" his g tube feeds this week to where he's getting it over a faster time period. It's hard to explain the scrunching thing, so I'm not even going to attempt b/c I don't want to run the risk of sounding like an idiot! haha! Anyways, maybe just maybe Dr. A. will decide to let Cannon try to take all bottles sometime this week and see if we can get him off these g tube feedings before we go home! Last week we just knew for sure he'd go home still taking feeds through his g tube and quite possibly having to do it with a pump! But he had this turn around so we have hopes of going home on all bottles! Come on Cannon show us how strong and amazing you are once again!!!!
NOW we are finally able to start talking about going home! Of course we haven't discussed it with Dr. A. yet because when he left for vacation Cannon wasn't doing so great on his bottles as he is now! But when he returns tomorrow he will see a totally different little boy! Now we are really believing we will get to take him home in the next couple of weeks! I am interested to see if Dr. A. will talk about going home when he gets back! HURRY UP MONDAY!! haha! Trent and I are already having that bittersweet feeling of what going home means. We are more than excited to bring our sweet baby home and start showing him off (a little at a time!)....but we are going to miss the little ACH family we have acquired! We love all of his primary nurses like family (and we look at them like family now b/c we spend so much time with them that they probably get sick of us!), and his drs.! It will be hard to say bye to the nurses especially! Photos of them to come......
Maybe just maybe my next post will be written from our home! We will see!