Birth/Coming Home Announcement

We finally got these done! Gosh, this was something I had been waiting a looong time to do. I loved the way they turned out. I'm also including a video of Asher playing with a "lovie" blankie for the first time. He's getting so expressive! I'm also finishing up our version of his baby book. I was looking at the books out there...and well, they all have pages we just couldn't fill out because our story is so different. So, I made him one that fits his story! I will hopefully find a way to post it somehow...

Tube-less and Tape-less after 6 1/2 months!

Asher had his g-button surgery last Friday. (Aug. 17th) Poor buddy had waaay too many wires and tubes afterwards. He had an ng in his nose draining his tummy, the g-tube itself had a tube and bag attached to vent his tummy. Then he had an iv on his foot, and a pulse ox on a toe, and all the normal leads recording his heart rate and breathing rates (5 of those.) We were all so ready for him to loose some wires! And the day after surgery..he slowly did. 

Ah, feeling a little better. 

Just the tube venting and the iv left. 

Wire free! 

Here's a close up of the button with gauze underneath it. The gauze needs to be there a few weeks to protect the skin under it. The incision is next to it and covered with clear tape so you can't see it very well. 

We LOVE seeing his tube-less, tape-less face!!! His first week after surgery was pretty rough. He didn't feel very well. He was throwing up at every feeding and crying, coughing, gagging through all the throwing up. We think his tummy was sore, inside and out.... so every time he coughed or threw up, it hurt his tummy too. :(  We ran his feeds even slower (over 2 hours), dropped the calories a little, and the volume at little and that seemed to help.  We hope to start feeding therapy very very soon at Our Children's House. He still doesn't want to suck at all. Part of that is he's been through a lot, and also we think he's not super hungry because his food runs for so long. But it's all a balancing act....creating an environment for him to want to eat...and throwing up all the time doesn't make anyone want to eat! So, we will begin to take slow steps back to eating, and hope and pray he will want to eat and will enjoy it one day!! 

It's been MUCH harder to catch Asher smiling on camera now.  My phone captures his attention and he watches it and focuses on it instead of smiling at me because of what I'm saying to him! It's so funny how observant he's becoming. His hands catch his eye every now and then and he watches them move as if they aren't part of him! It's so funny. He's "growing up"....getting so aware and smart! 

Our Last Few Weeks in Pictures

I'm smiling a lot more now! 

My super cheesy smile

Meeting my Uncle Ryan

First time in bumbo...mm, not too sure.

Look at my rolls! Mom is thankful for those! 

Meeting cousin Brayden 

And Cousin Rylie

Meeting Cousin Kent 

Rylie is sooo pretty...

Listening to Dig Dig 

Uncle Michael 

I wasn't sure how to be in this thing. I just wanted to stare at mom! 

Back at children's for my 5th dilation of my espohagus. 

I love my lamb! 

I would watch it and talk to it, and then grunt when it turned off! 

Getting an EKG, my heartrate did funny things in the night so they just wanted to check. 

My "uh oh" face when I threw up my tube last week. 

After getting tube back down, so exhausting. I gag, and cry, and scream every time I get this done! It's not fun! 

My "don't give me a glycerin suppository" face, I can poop on my own! And I did. A LOT.  I have done this a few times in the NICU too..I wait until someone mentions suppositories and even gets it in their hand, ready to go....and then I'll go. I just like to see how serious everyone is about it. Come on, no need for those desperate measures. I just do things in my own timing sometimes! Mmm..maybe I DO have something in me from my mom!! 

Loving on my lamb in the ER.... my 2nd time in two days to get the tube put BACK down because I threw it up- AGAIN. :(

Dad's so good with me. 

Super Asher! Always calm and collected in times of crisis. :)

My superman pose

We've had a busy last few weeks meeting lots of relatives and then this last week, being in the hospital off and on for different issues. Not so fun. Asher is scheduled to get the g-tube this Friday and it can't come soon enough. Going to the hospital two days in a row to get his NG tube dropped again was terrible! It's a long process of waiting, and then waiting some more. Meanwhile, Asher gets hungry and irritated and then the actual putting the tube down is awful. He screams and gags, and the 2nd time I was just done. I was done with him having to have this tube. I was at a breaking point...I either was going to burst into tears or rip someone's head off. That's a mama bear for you I guess! The NG tube has been a lifesaver, providing him the nourishment he needs, but it is such a pain and definitely causes him discomfort. We are ready to move on! Bryan and I have both realized eating is going to be a long road. Asher is getting older and wiser. And he's starting to choose whether or not he wants to eat. He's really just protecting himself I think. He's experienced enough negative things while trying to eat, discomfort with the tube, gagging on it, throwing up, reflux....so we think he's just decided he'd rather not. I can't blame him much..he's put up with a LOT in his first 6 months. But hopefully getting the g-tube will be a step in the right direction. If we can remove the irritation of the NG from the back of his throat, maybe we can start taking steps forward with therapy. There's a chance the NG contributes to throwing up, to extra mucous production (body's response to a foreign, irritating object), and aversion because it hits his gag reflex often when he sucks. So, we are trying to keep our chins up and realize we won't be here in this spot forever, we will get good help, go slow...and work back up to eating being a fun, positive thing! I look forward to the days when feeding doesn't take up our whole day and we can do some fun things too. Right now it takes almost 2 hours to run his food slowly through the tube (to help in not throwing up) and give his tummy a break in the middle of the feed, and then sitting up at the end to avoid throwing up. It's exhausting for both of us and hard to fit in play time, or anything else besides some cat naps during the feeding and a little after. So, looking forward to an easier schedule for all of us!

I am up late tonight finishing a feed with him and I was holding him while he slept and I just thought "you won't get to do this forever..he won't be this small and able to sleep like this on you forever". Although I'd much rather make memories during the day...I'll still stop and be thankful! Being content where I am is a theme song that plays over and over on the soundtrack of my life! Cheesy analogy, but- hey... it's really late. :) But it's so true.  I know I've said this over and over. But it's hard lesson to learn and swallow! To find joy in the moment...joy in whatever "right now" looks like in my life. So, being home all the time and not getting to go anywhere either with or without Asher- there is joy to be found in that. In getting to spend LOTS of time with my baby. Some people don't have that luxury. And it feels like he'll be a little baby FOREVER, but they tell me he won't and he WILL grow up. I'll believe it when I see it! Ha.  I just had a flash forward of busy days with Asher playing sports, going to school...and I just imagining then we will wish for more down time at home! Ok, I better sign off because who knows what I'll type next if I stay up too much later I'll probably be eating paper again for lunch! (Today I ate almost ALL my sandwich and THEN noticed the paper between sliced cheese was there- in my sandwich...yup, ate paper for lunch. Guess that's "mommy brain" I've heard about...brain function isn't quite the same when a baby enters the scene.)  Good night!

6 Months Old!

Happy 6 Month Birthday yesterday to our baby boy! He's 6 months and then 2 months is his adjusted age. AND he's tipping the scales at 9lbs 1 oz as of today! WO. Never thought we'd see that. When he's 10lbs, that will be even crazier!

Asher has had a really hard week with eating. He's stopped altogether taking a bottle. He's also been coughing/gagging/spitting/throwing up quite a bit as well the last few days. And that's tube feedings he's throwing up...so we are a little puzzled as to what is going on. His stricture would cause throwing up during bottle feeding, but not really tube feeding. We are going back to Children's Monday to have his esophagus looked at and dilated again, and to see if they can tell what else is going on. We hope we can find some answers! It's very frustrating to take steps back...though we are VERY familiar with that pattern from the nicu. We had 3 speech therapists come by today and they all think he wants to eat, has the skills, but is just very averted to it because of his feeding tube and all his experiences so far with things in his mouth...and whatever is uncomfortable internally with reflux and the stricture. Poor. Little. Man. I just want him to enjoy eating and for it to be EASY.  Not God's plan right now. So, in the mean time, we will keep trusting in the Lord's plan, and asking for forgiveness where we are not doing that! (I need to do this, like several times a day lately!) I've had a very hard week, emotionally and cried many times over all this. It's so frustrating and hard not to know what to do to help him. But, I am so relieved to finally have some help at home! We have speech therapist coming now, and will soon have some OT and PT support as well I hope. I am so excited about this!

Please pray for little Asher and his tummy, esophagus, and that the doctors and therapists we encounter will have wisdom for what to try next to help him. And please pray for patience for us in the mean time, and trust, like I said.  Thank you so much for your prayers now and this entire journey. They have been heard over and over again!

Dear Asher, 

    You are such a sweetie!! You have learned to smile and coo at us, and you LOVE to make all kinds of faces! You also love to focus on people and some toys now, but mostly people. I can talk to you for a long time and you will look at me and gaze at me with your big, blue beautiful eyes as if my voice is just so magical and captivating! Will you always listen to your mommy so well?? I hope so! And then you start trying to make sounds and faces back at me as if you want to talk back. You are a happy little boy almost all of the time!  The only time you get really upset is when you are trying to learn to eat. And we are working on helping you with that so that it will be more fun! We love you so much, and we are so thankful God created you, and gave you to us so we could be your parents. You are teaching us a lot about having faith in God's plan and trusting Him! We can't wait to see you grow more and more! But not too much.... I loooove you cuddling with me and falling asleep on me. I will miss that when you are a big boy. Happy 6 Month Birthday!! 

Love, 

Mom