Saturday, May 25, 2013
Tick tick tick...
Ax is in the middle of his fourth car seat test. Finger crossed...if he passes, we go home!
This is going to be the longest 2 hrs of my life...
Friday, May 24, 2013
Car Seat Test(s)
Quick update! Axton is cruising along and getting stronger. We are still waiting on him to pass his car seat test. He has failed it three times now. Each time he does a bit better. Yesterday, he made it the full two hours, but just had too many desats during the test. Good news though, each time he desatted, he rebounded very quickly. This is just a prematurity issue and will resolve with time. So, we are still waiting. They will retest tomorrow. Fingers crossed, we will be busting out of here tomorrow.
I just love how teeny and cozy he looks in his car seat :)
I just love how teeny and cozy he looks in his car seat :)
Wednesday, May 22, 2013
One foot out the door!
A lot has happened around here since Sunday! Axton passed his hearing screen, he was circumcised, and we have completed all other requirements for discharge except for that pesky little car seat test. They tried the test yesterday and little dude failed it pretty quickly. They must sit in their car seat for 2 hours and not desat below 88, or have any bradys. Axton has had some issues with desatting, so of course, this is the one thing holding us here. He is great when he is laying down or being held, and hardly ever desats while feeding anymore, but the position the car seat puts a little body in, is not the most conducive for optimal oxygen saturation.
So, we wait. I'm not sure if they will retest today, or wait until tomorrow. We were so hoping we would be outta here yesterday or today, but little man is holding out on us. It's hard to be patient when this marathon of a journey seems to never end. But we know that he'll be ready when he's ready and so will we!
If only he knew how great it would be to go home ;)
So, we wait. I'm not sure if they will retest today, or wait until tomorrow. We were so hoping we would be outta here yesterday or today, but little man is holding out on us. It's hard to be patient when this marathon of a journey seems to never end. But we know that he'll be ready when he's ready and so will we!
If only he knew how great it would be to go home ;)
Sunday, May 19, 2013
Happy Stormy Sunday
Hope everyone is staying safe out there...I'm camped out at the hospital just in case things gets a little hairy. My crazy mama gene is in high gear and I just want to make sure little Ax stays safe. I swear storms never bothered me until we had kiddos! Now, I'm not a fan. But anyways, enough about that.
Our littlest little man is doing great! They took him back off the cannula at 7am this morning, and he is back up to trying to nipple all feeds.
He is doing well at keeping his oxygen saturation up and seems to not be tiring out as easily. Just my own opinion; tonight will be a big indicator as to whether he's ready or not to handle all of this. If he does well over night tolerating everything, I think we will be well on our way to getting the heck out of here. We are cautiously optimistic about it all.
He is doing great on his weight gain and now weighs 2978g or 6lbs 9ozs. He doesn't fit in any preemie clothes, and if he keeps this up, will be out of newborn stuff in no time.
In other news...we had a great weekend full of lots of visitors! We also got to spend some quality time with Ayson on Friday night at the bowling alley. He had a blast, and surprisingly able to do it all by himself, from picking up his ball, to carrying it to the ramp, to pushing it down the alley. He has been asking to go every day since then!
I'm so, glad Aaron and I got to spend some time with him doing something he loved because a lot of our time is spent here at the hospital, which I'm sure isn't much fun for him. But, he has been a trooper through it all.
Until tomorrow...enjoy a few other pics from our weekend :)
Our littlest little man is doing great! They took him back off the cannula at 7am this morning, and he is back up to trying to nipple all feeds.
He is doing well at keeping his oxygen saturation up and seems to not be tiring out as easily. Just my own opinion; tonight will be a big indicator as to whether he's ready or not to handle all of this. If he does well over night tolerating everything, I think we will be well on our way to getting the heck out of here. We are cautiously optimistic about it all.
He is doing great on his weight gain and now weighs 2978g or 6lbs 9ozs. He doesn't fit in any preemie clothes, and if he keeps this up, will be out of newborn stuff in no time.
In other news...we had a great weekend full of lots of visitors! We also got to spend some quality time with Ayson on Friday night at the bowling alley. He had a blast, and surprisingly able to do it all by himself, from picking up his ball, to carrying it to the ramp, to pushing it down the alley. He has been asking to go every day since then!
I'm so, glad Aaron and I got to spend some time with him doing something he loved because a lot of our time is spent here at the hospital, which I'm sure isn't much fun for him. But, he has been a trooper through it all.
Until tomorrow...enjoy a few other pics from our weekend :)
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| Hanging out next to me on the couch :) |
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| Sharon getting in a little bit of cuddle time |
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| Dominic and Ayson out for an afternoon ride to the park :) |
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| Learning to share with our friends ;) |
Thursday, May 16, 2013
Making News Already ;)
Check out today's Tulsa World! You might just see a familiar face or two. The Tulsa World stopped by on Monday to do a story on the NICU and the March of Dimes. They asked if I wouldn't mind talking to them and as it turns out, we were a perfect fit for their story because of our NICU experience as well as our involvement in the March of Dimes. I was honored to share our story about our two little miracle babies...ENJOY!
If you have a chance to get the print version...pick one up! The write-up is big and has all the pictures from the online version. It's in the Scene section.
If you have a chance to get the print version...pick one up! The write-up is big and has all the pictures from the online version. It's in the Scene section.
Wednesday, May 15, 2013
Day 19
**From Yesterday**
Today brought a few changes for little man. He decided that he was so over his NG tube (tube in his nose) so he pulled it out himself. Since he has been doing so well with eating from his bottle, the nurse decided to leave it out. So, as long as he continues to take all his feeds by mouth, he won't need that stinking tube anymore :) I love his sweet little face with no tubes or tape on it!
That was at about 10:00am, then our poor little buddy crashed after his 2pm feed. His oxygen saturation had been trending down over the past few days, and after his feed it dropped down in to the low 60's and he was having a hard time rebounding. So, they have put him back on the nasal cannula, caffeine, and put his feeding tube back in. The thought is, that he was just so worn out from all the change that he needed rest, then once his little body was strong again he will be able to pick up where he left off.
So, on to today (5/15/13). He seems to be doing much better. His color looks better and his overall demeanor is better. He is less sleepy and irritable. His doctor is pretty confident that we were just asking too much out of him. So, the plan for the rest of today and tonite is to let him keep resting until tomorrow, then reevaluate. This means he will stay on the cannula and they will not try to nipple any feeds. We are a little bummed about the setback, but realize that he will be ready when he is ready. This is just the nature of having a preemie and how things go in the NICU. We are hopeful that tomorrow he will be strong enough to start taking some of his feeds by bottle again. Only time will tell!
Despite all this...he is doing well maintaining his body temperature now that he is out of the isolette and he is continuing to gain weight. Yesterday he gained 66g, putting his weight at 6lbs 3.6oz. Here's our little fighter in his cute new sleeper :)
Also, Ax and Ays want to wish their Aunt Lou Lou a Happy Birthday today!!!!!
Today brought a few changes for little man. He decided that he was so over his NG tube (tube in his nose) so he pulled it out himself. Since he has been doing so well with eating from his bottle, the nurse decided to leave it out. So, as long as he continues to take all his feeds by mouth, he won't need that stinking tube anymore :) I love his sweet little face with no tubes or tape on it!
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| Tube Free...for a bit |
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| Back to life with tubes...at least he looks happy :) |
So, on to today (5/15/13). He seems to be doing much better. His color looks better and his overall demeanor is better. He is less sleepy and irritable. His doctor is pretty confident that we were just asking too much out of him. So, the plan for the rest of today and tonite is to let him keep resting until tomorrow, then reevaluate. This means he will stay on the cannula and they will not try to nipple any feeds. We are a little bummed about the setback, but realize that he will be ready when he is ready. This is just the nature of having a preemie and how things go in the NICU. We are hopeful that tomorrow he will be strong enough to start taking some of his feeds by bottle again. Only time will tell!
Despite all this...he is doing well maintaining his body temperature now that he is out of the isolette and he is continuing to gain weight. Yesterday he gained 66g, putting his weight at 6lbs 3.6oz. Here's our little fighter in his cute new sleeper :)
Also, Ax and Ays want to wish their Aunt Lou Lou a Happy Birthday today!!!!!
Monday, May 13, 2013
Big boy!
Today's new and exciting development...Ax man is in a big boy bed! Now the hard work of maintaining his body temperature begins.
Check him out :)
Sunday, May 12, 2013
Last few days...
Not too much has changed with our little man. It's just a game of hurry up and wait at this point. He continues to gain weight daily, and has finally surpassed his birth weight! Today he weighed 5lbs 15.4 oz...go buddy!!!
He has the cutest dimples:)
Go pokes!!!
Hungry & ready to eat!!
Bonding time:)
Ays & the penguins :)
He is at full feeds, and they are trying to get him to take 6 out of 8 feeds by bottle. So far today, he has done great and taken 5 full feeds by bottle. The process of getting them to take all of their feeds by bottle just takes time because its hard for them to expend so much energy to eat. The older they get, the easier it is for them.
We are hoping to be outta this place soon, but it will all depend on little dude and when he is ready!
This Mother's Day was special for me because I got to spend time with both Ays & Ax. Even if we couldn't be together as a family quite yet, we made the best of it and split our time between the zoo and the NICU.
Also, Happy Mother's Day to our moms. You both have been so selfless and caring thru this whole journey. We love you both!!
Enjoy these pics from the weekend:)
Thursday, May 9, 2013
2 Weeks Old
First of all, I want to give a shout out to our biggest little man for being so good at his first dentist appointment.
Anyone who knows Ays can tell you that he's not the biggest fan of taking part in any kind of appointment. The kid won't even let you cut his hair without out flipping out, so asking him to let a stranger clean his teeth seemed like a guaranteed disaster. But he surprised the heck out of me! He did amazing!!!
He let them take x-rays, clean his teeth, and even floss them!!! I was so proud of him:)
Now, on to Ax man. He is still doing just great! He is up to 50mL's on his feeds and takes 3-4 of them by bottle. He is also close to being able to come out of the isolette and in to an open-air crib.
At this point, it is just a function of time as to when he can come home. He still has several milestones to reach before that happens, but he is getting closer!
And this was too sweet to not share. This was on his door when I got to the hospital today. One of the night nurses made this for me for Mother's Day...how thoughtful!!! I love it:)
Tuesday, May 7, 2013
Making progress...
Short update tonite...my phone is running low on batteries and the Thunder is playing:) Thunder Up!!!
Axton is doing great! He had his PICC line removed, is up to 45ml on his feeds and is taking four of his feeds by bottle! He's doing so great!!
The most exciting news of the day was the removal of his PICC line because that means he can wear clothes:)
Enjoy the pics of our growing little man! Until tomorrow...
Sunday, May 5, 2013
Cruisin'
Our little rockstar is cruising along! He gained 47g yesterday, putting his weight at 5lbs 7.6ozs. It seems that each day now, he is making great strides towards coming home. Yesterday was a big milestone day for Axton because he began trying to take one of his feeds from a bottle. Babies don't really develop the "suck" reflex until around 34 weeks, so it is hard for them to eat from a bottle much before that time. Coordinating the action of "suck, swallow, breathe" is difficult, not to mention, exhausting for them. So, at this point, anything that they can take by mouth is a great accomplishment!
Axton rocked his first attempt at bottle feeding. His feeds were at 25mL yesterday and he took 18mL. Little dude was exhausted afterwards, but he did it! This morning he did it again :) So, they have now upped his feeds to 35mL every three hours and two of those feeds will be from a bottle.
Here he is before his 5pm feeding tonite...wide awake and ready to give it a shot. I got to feed him this time and he did so great! He took 17mL for me before he got the hiccups, so we gave him a break and put the rest in the tube in his nose. So proud of him :)
He got to sport one of the hats I made him today as well! It won't be long now before we can start putting clothes on him...yeah! He's starting to look less and less like a preemie, and more along the lines of a baby that you wouldn't be scared to take home. Keep it up buddy :)
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| Big boy eating from a bottle for the first time |
Here he is before his 5pm feeding tonite...wide awake and ready to give it a shot. I got to feed him this time and he did so great! He took 17mL for me before he got the hiccups, so we gave him a break and put the rest in the tube in his nose. So proud of him :)
Friday, May 3, 2013
Tube Free...almost :)
Axton had another great day. His weight is up to 5lbs 5.9ozs, and he is tolerating his feeds of 20mL very well. The most exciting news of the day, is little man is breathing tube free :) He has been doing so well on his cannula that they decided to take it off and see what happens. When we left this evening, he was doing great! Look at that sweet little tube free smile :) On another note...it's crazy how much Ax and Ays look alike!!!
He is still receiving all his feeds through a tube in his mouth that goes to his stomach. They will not attempt bottle feeds generally until they are off the nasal cannula. So, if he does well tonite off the nasal cannula, they may start nipple (bottle feeds) tomorrow or in the next couple of days. This is great, of course, because he must be able to take all of his feeds by nipple before he can go home.
Aaron got to hold Axton for the first time tonite...that is one happy daddy!
And here's a family photo (minus Ays). Poor Ayson can't go in the NICU, so we are all patiently awaiting our first family photo with all of us together.
Tomorrow is the March of Dimes walk. We are honored to be the ambassador family and are looking forward to a fun event. Thank you to all of you who are walking with us and/or who have donated to our team!
He is still receiving all his feeds through a tube in his mouth that goes to his stomach. They will not attempt bottle feeds generally until they are off the nasal cannula. So, if he does well tonite off the nasal cannula, they may start nipple (bottle feeds) tomorrow or in the next couple of days. This is great, of course, because he must be able to take all of his feeds by nipple before he can go home.
Aaron got to hold Axton for the first time tonite...that is one happy daddy!
And here's a family photo (minus Ays). Poor Ayson can't go in the NICU, so we are all patiently awaiting our first family photo with all of us together.
Tomorrow is the March of Dimes walk. We are honored to be the ambassador family and are looking forward to a fun event. Thank you to all of you who are walking with us and/or who have donated to our team!
Thursday, May 2, 2013
1 Week Old
Our favorite little NICU resident is one week old already! What a difference a week makes. We had some scary moments in his first few days, but since then our little buddy is improving every day.
No pictures today because I couldn't go see him, but the nurses had nothing but good news for us. They have removed him from the bililights...no more sunglasses and blue lights :) They also upped his feeds to 15mL every three hours this morning. He has tolerated the feeds very well with little residuals...go buddy go! He is also doing well on the nasal cannula on room air.
They hadn't weighed him yet when I called this evening, but yesterday he gained 71 grams, putting his weight at 5lbs 4ozs. He is starting to gain back the weight he lost while he was on the vent with no feeds :)
We are so excited about the progress he has made. I can't wait to get back up there tomorrow and spend some time with him now that I'm feeling better! And Aaron will be back up here too!! I know he is super excited to see him because he hasn't seen him since Monday.
Until tomorrow...
No pictures today because I couldn't go see him, but the nurses had nothing but good news for us. They have removed him from the bililights...no more sunglasses and blue lights :) They also upped his feeds to 15mL every three hours this morning. He has tolerated the feeds very well with little residuals...go buddy go! He is also doing well on the nasal cannula on room air.
They hadn't weighed him yet when I called this evening, but yesterday he gained 71 grams, putting his weight at 5lbs 4ozs. He is starting to gain back the weight he lost while he was on the vent with no feeds :)
We are so excited about the progress he has made. I can't wait to get back up there tomorrow and spend some time with him now that I'm feeling better! And Aaron will be back up here too!! I know he is super excited to see him because he hasn't seen him since Monday.
Until tomorrow...
Day 6
My awesome body decided to get crazy sick last night, so I have been out of commission for the past 24 hours :( Here is the post I started yesterday and never got to finish...
Today has brought many changes for our little buddy...and they are all great changes :)
When I got there this morning, they were getting ready to switch him to a different bed that doesn't give him so much heat. This is a welcome change because it means he is inching towards being able to maintain his body temperature without extra help from the bed.
So, all of this meant that I go t to hold him for the first time. It was the most amazing feeling ever!! Even though it was for a short while, it did my mama heart so good. He was crying when they handed him to me, but he immediately calmed down and just stared at me the whole time.
Shortly after they switched him to the new bed, the Dr. came in and wanted to give him a shot at life without anything to aide in his breathing. When I left, he had been off the Sipap machine for over an hour and was doing fantastic! Look how sweet his little face looks with no tubes over his nose!
They also upped his feeds to 8mL every three hours. They had backed him off to 3mL, but was tolerating it well, so we'll see how his little digestive system does with the increased amount of milk.
Today has brought many changes for our little buddy...and they are all great changes :)
When I got there this morning, they were getting ready to switch him to a different bed that doesn't give him so much heat. This is a welcome change because it means he is inching towards being able to maintain his body temperature without extra help from the bed.
So, all of this meant that I go t to hold him for the first time. It was the most amazing feeling ever!! Even though it was for a short while, it did my mama heart so good. He was crying when they handed him to me, but he immediately calmed down and just stared at me the whole time.
Shortly after they switched him to the new bed, the Dr. came in and wanted to give him a shot at life without anything to aide in his breathing. When I left, he had been off the Sipap machine for over an hour and was doing fantastic! Look how sweet his little face looks with no tubes over his nose!
They also upped his feeds to 8mL every three hours. They had backed him off to 3mL, but was tolerating it well, so we'll see how his little digestive system does with the increased amount of milk.
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