So we have made it to week 9...it has been a week of ups and downs...mainly ups for the boys though...
Aiden:
He is as of today 4lbs 6oz! He is now in an open crib!
He has also eaten 20ccs today from a bottle!
Brayden:
He had some ups and downs this week.
He had to go up on his nasal cannula...initially to 2 liters but now down to 1 1/2 liters.
He also had some big residuals once they increased his cannula...
The good news though is, today he drank all of his bottle! 26 cc's! He did better then his brother! The only thing is right now they will only do the bottle once a day bc they don't want to overstimulate them and want feeding to be a positive experience.
Brayden is now at 2lbs 14oz! He did reach 3lbs this week but went down some.
Both of my boys met with speech therapists who help them with their bottle feeding and an occupational therapist to help them with body movements and head shape. So far so good!
This week I learned that you really need to tell the NICU nurses exactly what you want to be involved in...I have had several instances where the nurses had made changes that had to do with my babies and I didn't learn about it until I asked or I found out by going there. I didn't want to be surprised by anything. You are their parent so you should know everything they are doing and some things before they actually do it. So I have learned that I need to tell them that I want to know what's going on...and this really happened this week also bc I was sick and couldn't see them.
Another thing that irks me is that after an incident happened the nurse told me that she was advocating for the patient. I am sorry but that is just wrong! I am their mom! Before doing anything you should be contacting me first! She didn't even bother to contact me and I found out the next day when I went there! The sad thing is when I told my obgyn the next day about what happened he wasn't surprised and called the neonatologist on my behalf bc he believed that shouldn't happen and was telling me how these types of things causes parents of NICU parents to have postpartum depression...
So this is my take away for those who are going through the NICU experience...make sure to spell out exactly what you want to be involved in and how! You are their parents! Don't be afraid to tell them how you want things done!
Until next time!
Lilypie First Birthday tickers
Tuesday, September 24, 2013
Tuesday, September 17, 2013
They are 2 months old!
I cannot believe it has already been 2 months since our twins entered this world! It has been such an experience already but know that once we get to take them home it will be another challenge and something new to experience.
As of today here is their update...
Brayden:
He is now 2lbs 13oz! He has really come a long way and is catching up quickly to his brother...he is eating like a champ at 22ccs...almost an ounce!
He has been alarming a lot lately so his nasal cannula fluid had to be increased but that has been helping so hopefully he will go back down soon!
They had another eye exam this week and he is starting to get signs of ROP so another check will be in 2 weeks...
Aiden:
He is now at 4lbs 1oz! Woohoo! He can now be put in a open crib as soon as I have time to go there bc I want to be there when they put him in it...hopefully the start of this cold I feel goes away so that I can see them...
He grew out of his caffeine so none for him and he is not alarming much so that is a good sign!
Other then this there is not much else...Aiden needs to be able to regulate his own temperature in order to stay in an open crib...then he needs to pass some other things so that he can come home...
Oh I was also told that they can now be in the same room! They have a twin suite that had opened up so now they can share a room!
Today also we got to take my 17 month old cutie to the Shedd Aquarium! He had a lot of fun and so glad he did...I was worried he wouldn't bc he didn't really enjoy the zoo and he went twice...
Until next time!
As of today here is their update...
Brayden:
He is now 2lbs 13oz! He has really come a long way and is catching up quickly to his brother...he is eating like a champ at 22ccs...almost an ounce!
He has been alarming a lot lately so his nasal cannula fluid had to be increased but that has been helping so hopefully he will go back down soon!
They had another eye exam this week and he is starting to get signs of ROP so another check will be in 2 weeks...
Aiden:
He is now at 4lbs 1oz! Woohoo! He can now be put in a open crib as soon as I have time to go there bc I want to be there when they put him in it...hopefully the start of this cold I feel goes away so that I can see them...
He grew out of his caffeine so none for him and he is not alarming much so that is a good sign!
Other then this there is not much else...Aiden needs to be able to regulate his own temperature in order to stay in an open crib...then he needs to pass some other things so that he can come home...
Oh I was also told that they can now be in the same room! They have a twin suite that had opened up so now they can share a room!
Today also we got to take my 17 month old cutie to the Shedd Aquarium! He had a lot of fun and so glad he did...I was worried he wouldn't bc he didn't really enjoy the zoo and he went twice...
Until next time!
Saturday, September 14, 2013
Night of firsts
Hi everyone!
I know the week is not up yet but I wanted to share some of my excitement from tonight.
We went to do CPR tonight...however instead of that, we gave our fighters baths for the first time! It was exciting but also nerve wrecking bc they are so tiny! There were several steps we had to go through bc they had their nasal cannulas, feeding tubes and leads on their bodies but we went through them twice (thats what is nice about having twins) so I think we got the hang of it...it was hard though once it came to putting them in the water with one hand and rinsing them and washing their hair in the other bc they move so much and they are tiny...I kept feeling like I was going to lose grip of their tiny heads...
Then we did something that we did not think Aiden would not be able to accomplish yet which was feeding from a bottle...he showed interest bc he kept putting his hand near his mouth...sign of rooting...so we gave it a shot...the nurse thought he may be able to eat about 3ccs and she told me not to be disappointed if he didnt take any bc it is still early...well guess what? He drank 12ccs! He totally shocked us and he barely let any come out...then he gave me a nice burp! I couldn't be prouder! Next time we come in, hoping to try bottle feeding Brayden!
Oh and Aiden is at 3lbs 12oz so 3 more ounces and he will be in an open crib!
Thanks for sharing in my excitement!
I know the week is not up yet but I wanted to share some of my excitement from tonight.
We went to do CPR tonight...however instead of that, we gave our fighters baths for the first time! It was exciting but also nerve wrecking bc they are so tiny! There were several steps we had to go through bc they had their nasal cannulas, feeding tubes and leads on their bodies but we went through them twice (thats what is nice about having twins) so I think we got the hang of it...it was hard though once it came to putting them in the water with one hand and rinsing them and washing their hair in the other bc they move so much and they are tiny...I kept feeling like I was going to lose grip of their tiny heads...
Then we did something that we did not think Aiden would not be able to accomplish yet which was feeding from a bottle...he showed interest bc he kept putting his hand near his mouth...sign of rooting...so we gave it a shot...the nurse thought he may be able to eat about 3ccs and she told me not to be disappointed if he didnt take any bc it is still early...well guess what? He drank 12ccs! He totally shocked us and he barely let any come out...then he gave me a nice burp! I couldn't be prouder! Next time we come in, hoping to try bottle feeding Brayden!
Oh and Aiden is at 3lbs 12oz so 3 more ounces and he will be in an open crib!
Thanks for sharing in my excitement!
Tuesday, September 10, 2013
7 week update
Here is the current update for them...
Brayden:
He is 2lbs 10oz as of today! He has almost gained a whole lb since being born! I know it may not seem like a lot in 7 weeks but with all that he went through it is...
He is also now eating 17ccs which means full feeds! Also bc they are now being supplemented they are using a electrical pump to slowly give out food...right now 45 minutes to finish the feeding bc of the risk of reflux (which his brother has).
He also has no more PICC line...woohoo! One less thing on his body...makes it easier to do kangaroo care!
Yesterday and today they couldn't hear his heart murmur! So relieved for that!
And finally...he has caught up to his brother on the amount of fluid for the nasal cannula...3/4 liter which means next step is getting the nasal cannula completely out!
Bad news...breathing issues but that is to be expected...
Aiden:
He is at 3lbs 10oz! If you go into Brayden's room then to Aiden's, you would be amazed at how much bigger he looks! I was shocked! Oh and he is 5oz away from being out of the isolette and being in a crib...woohoo!
He is eating 30cc's which is ounce...but bc he is being supplemented with formula he has reflux and causes him to stop breathing which I experienced several times while doing kangaroo care...it is very scary bc you have to kind of give him little pats so that he will start to breathe again and you can tell he is in pain bc he scrunches up his face...there is no medicine they can give them for reflux so they just need to grow out of it...
He barely has a heart murmur...sometimes they can't here it but sometimes it is very faint...
And he is at 3/4 liter on his nasal cannula...
Overall all the nurses tell us they are doing better then expected at their age which would be 33 weeks gestation...these guys should have had 7 more weeks inside :( but I cannot believe 7 weeks has flown and with all that we have to do to get them ready to come home, I am sure it will fly by...hoping there are no more setbacks...
This week to start getting ready to bring them home, I will start giving my guys a bath...then we need to do CPR training at the hospital which is Friday...very exciting stuff...
On a different note I am going to vent a little...this is especially for those who are or will be going through a NICU experience...please bear with me...
First on Saturday I had a bad experience with a nurse that was filling in...if you would like details please feel free to message me and I will tell you...I just want those who have to experience the NICU that as soon as you have a bad encounter with a nurse to feel free to ask for a charge nurse bc they can get you a new nurse on the spot! I didn't know this and waited until the next day to try to talk to a different nurse but I had told the receptionist and she had me speak with a charge nurse right away...that is one thing they don't tell you about...being able to talk to a charge nurse if you have any issues...then you can talk to their boss...they both apologized and told me that if they ever had any issues to call them right away bc we as NICU parents already have so much to deal with that we shouldn't have to lose sleep over that...
Second...I feel as if anything else that happens that is not good, I am going to completely lose it! I just feel on edge...I am sure other NICU parents can attest to this...I don't think I can handle anymore bad news...I have been through 3 miscarriages, having to be on bedrest for 6 months with my cutie Caleb along with weekly shots and tons of doctor appointments and then 13 weeks of bedrest with these twins only for it to not be bc of my incompetent cervix but bc of an infection...I feel as if my body has failed my babies and now my twins have to go through all of this...on top of this I am stressing out bc of all the financial stuff that has to do with doctors and hospitals, etc...why can't they all put it in one easy form every month telling me what we owe? Why make it so difficult?
On top of this? I feel so split...having to go see the twins but also wanting to spend time with my cutie at home...when I am home I feel bad that I can't see my babies in the hospital and then when I am in the hospital thinking about my cutie at home and then as I get ready to leave the hospital not wanting to leave them...
Okay enough of the venting...needed that out not just for me but for those who may read this who is also going through the same thing...just know you are not alone...
Anyways thanks for reading and keeping up to date on my boys...until next time!
Tuesday, September 3, 2013
6 week update
So I hope everyone had a wonderful Labor Day!
I did by going to see my babies in the NICU! They are doing as well as they could be.
Brayden:
They found another infection but they believe it could be that one of his lines could have been contaminated with the stuff that is on everyone's skin so it is a wait and see.
Brayden is now at 2lbs 5oz! Yay! He is eating 3cc's every 3 hours and no residuals (no feedings coming back up)
He got his eyes checked and so far no retinopathy of prematurity (ROP)...next check in 2 weeks...another YAY!
His nasal cannula fluid is at 1 1/2 liters...
He still has apnea, breathing issues and a heart murmur but not worried about that as of yet
Aiden:
Aiden is now at 3lbs 4oz! He is taking in 27cc's of breast milk with a tiny bit of residual.
He also did something amazing! He was laying his head facing the left side on his belly and the next thing I know he turned his head to face the right side! I was in shock! I went to ask the nurse when he started to do that but she was not one of our normal nurses so she didn't know...I was so proud!
Also he at 1/4 liter for his nasal cannula so the next step down would be to not be on the cannula anymore...can't wait! Oh and he is growing out of the caffeine that they are giving him for apnea and breathing which they are letting him grow out of bc it is helping him alarm less.
Finally his eyes are normal as well so next check is in 2 weeks :)
So overall a good update! I still proceed with caution with my feelings but it is getting easier...
Now an update on my cutie Caleb...
He is finally sleeping on his own again! Yay! My husband and i can finally get some quality sleep! Well he can also get quality sleep as well!
In other news, we found a house we love and our offer was accepted! Woohoo! We had been looking for some time now...please pray for us that they will not accept someone else's offer...we really need this house now that we have twins...
Thank you everyone! Until next time!
I did by going to see my babies in the NICU! They are doing as well as they could be.
Brayden:
They found another infection but they believe it could be that one of his lines could have been contaminated with the stuff that is on everyone's skin so it is a wait and see.
Brayden is now at 2lbs 5oz! Yay! He is eating 3cc's every 3 hours and no residuals (no feedings coming back up)
He got his eyes checked and so far no retinopathy of prematurity (ROP)...next check in 2 weeks...another YAY!
His nasal cannula fluid is at 1 1/2 liters...
He still has apnea, breathing issues and a heart murmur but not worried about that as of yet
Aiden:
Aiden is now at 3lbs 4oz! He is taking in 27cc's of breast milk with a tiny bit of residual.
He also did something amazing! He was laying his head facing the left side on his belly and the next thing I know he turned his head to face the right side! I was in shock! I went to ask the nurse when he started to do that but she was not one of our normal nurses so she didn't know...I was so proud!
Also he at 1/4 liter for his nasal cannula so the next step down would be to not be on the cannula anymore...can't wait! Oh and he is growing out of the caffeine that they are giving him for apnea and breathing which they are letting him grow out of bc it is helping him alarm less.
Finally his eyes are normal as well so next check is in 2 weeks :)
So overall a good update! I still proceed with caution with my feelings but it is getting easier...
Now an update on my cutie Caleb...
He is finally sleeping on his own again! Yay! My husband and i can finally get some quality sleep! Well he can also get quality sleep as well!
In other news, we found a house we love and our offer was accepted! Woohoo! We had been looking for some time now...please pray for us that they will not accept someone else's offer...we really need this house now that we have twins...
Thank you everyone! Until next time!
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