5 week update

Hi everyone!

I can't believe my little fighters have past the one month mark...it still seems like I just had them...

So both are doing well...

Brayden is finally eating and tolerating it at 2ccs...hope it continues and there is no stricture...he is 1lb 15oz so almost 2lbs! His brain bleed is also resolving so hopefully soon no more of that...

Aiden...his feeds are at 22ccs and he is on full feeds now so that means no more PICC line and will soon be on fortifiers to help him grow...he is currently at 3lbs! Also looks like he will be off his nasal cannula soon...

They both still have heart murmurs which the docs are not too worried about yet and both have issues with apnea and breathing but that's to be expected at this point...

Overall they are doing better then expected and hope they can come home in a couple months...

My cutie pie Caleb is doing well as well...we have been trying to do as much as possible with him...this week took him to Betty Brinn children's museum and to Possibility Playground which is a wonderful playground...will also be taking him swimming for the second time bc of the hot weather we have been having...

Please continue to pray for our fighters that they can continue to grow and heal...please also pray for us as we prepare for them to come home that we can be prepared emotionally, physically and also financially...we still need to get things for them before they come home...

Until next time...

One month old!

I cannot believe my little fighters are one month old now! Even with all the bumps in the road, the month has gone by fast! My bedrest didn't go by this fast.

So yesterday to mark their one month they had a follow up head ultrasound ...had to wait until today to get the results...but Brayden's bleed is resolving...yay! And still no bleed for Aiden!

Brayden started on feeds yesterday but unfortunately he didn't tolerate it well so they stopped it again and they will try again later...hopefully he can tolerate it soon or it looks like more surgery will be needed for him...sigh...I blame it on the full blue moon yesterday...I hate full moons!

Brayden is currently at his birth weight.

Aiden...my big boy has now reached 3 lbs! Also when I saw him yesterday he looked longer too! He is starting to fill out everywhere and soon will be too big for the isolette :)

They both continue to alarm but apparently last night nothing bad...they continue to stop breathing at times and their heart rates drop but they are able to get themselves out of it so that is good. They also still have their heart murmurs but no one is worried so that is good.

So yesterday while visiting with them I had to ask one of the nurses what she thinks when it comes to them going home and she said from how they look, it looks like Aiden may go home before his brother at the beginning of October and Brayden follow shortly after at the end of October that is if he doesn't have the surgery. That is in 2 months!

Now my worry is getting things ready for them...we need all these things to get them ready!

So my cutie pie Caleb is continuing to learn so many things! It amazes me how much he learns every day! He has learned to blow kisses this past week, make a frowny face which I do not know where he learned from, and all the words! He still loves to say bye bye, but he points at things and says what it is and if he doesn't know shows us that he wants us to say what it is and then he copies...he is growing up so fast!

Also I think he thinks he is a big boy bc he does not want to take naps! And if he does only wants to take it with me or if he falls asleep in the car or in the stroller...same with sleeping only wants to sleep in our bed...I think he is realizing that he has brothers and our attention is being taken away from him...

So I am thankful that my boys are doing well...but as always I am cautiously optimistic...we never know what might happen...I am a little afraid to be happy about the progress bc then something might happen.

Thank you everyone for following our journey thus far...we have a ways to go but we are getting there...

Until next time...

Update...

So I got a wonderful update on Brayden!

At first I saw the phone number and freaked...then heard their doctor's voice so freaked some more but thankfully he started with "this is a good update on your boys..." Thank goodness they start off saying that or I probably would not be able to focus on what he is saying...

Brayden's infection is finally gone!

Do you know how relieved I feel bc I thought it was lasting too long...

He is also now off the breathing tube and on a nasal cannula! And in a few days will be starting feedings.

Please pray that he is able to tolerate his feedings bc if he cannot he needs surgery done at children's hospital which is very risky.

In other news Aiden's weight is at 2lbs 10oz! He is 4oz away from his birth weight! And is at 4ccs of breast milk feedings.

Now going onto a month!

3 week update

So it has been 3 weeks since my little fighters have been born...cannot believe it...they have been through so much in their 3 weeks of life.

Yesterday both Brayden and Aiden had to have blood transfusions bc their hematocrit levels were really low. It was Aiden's first and Brayden has already had a couple.

Brayden is still trying to fight off his infection...his white cell count did go up testers after it has been going down but the nurses say it's probably bc of the low blood volume so hopefully it starts to go down again.

On the upside, their weights are up...Brayden is 1oz away from his birth weight...he's at 1lbs 13oz now...Aiden is at 2lbs 8oz now...he is 5oz away from his birth weight...I know their weights will go up and down but cannot wait until they are above their birth weight.

Lately I have been thinking a lot about their development and what it will be like as they grow older. I try not to think too far in the future but it's hard for me not to...it's just how I am...it has been very stressful and tiring...just not sure how much more I can handle...but I know I need to for the boys including my cutie Caleb. I think what would help is finding others who are in a similar situation to talk to...even though I have a great support system I think it would really help me if I could meet with others who knows what I am going through and can give me some good news...

What has been helping me through the days is seeing my cutie Caleb's adorable face every day! He does make my days brighter by all the things he is learning. He is learning new words every day like good, uh oh, saying bye bye and hi and waving, car, balloon, bottle and others which surprise me every day...all the things he understands which surprises me every day as well and the things we do together that he is picking up like putting puzzle pieces in the right place, doodling and wanting to read with me. He is our rainbow baby so my husband and I are trying to spend as much time as possible with him before Brayden and Aiden come home...

In a way having had them come early has been a blessing so I don't have to be on bedrest the whole time before the twins come home so that I can spend time with Caleb and do all kinds of things with him. For instance we got to go to the zoo, and to state fair...and looking forward to doing a lot more things with him!

Guess that's it for now...

Twins update

So I have not updated in a while...these past 2 weeks have been a roller coaster. My little Brayden has been through a lot...having to have surgery and dealing with an unknown infection...also finding out from his first head ultrasound that he had a bleed and his second ultrasound also showed bleeding. Also having to be on a high frequency oscillating ventilator but thankful that only lasted one day.

Aiden during this time has been through several bouts of apnea as well as being put on and off his feedings because of him getting a round belly and they have been being more cautious with Aiden because of Brayden's tear.

Well as of today, we have had some good news...they found out Brayden has a staph infection so they started him on new antibiotics and it has been responding...and he is one step closer to getting his drain completely out...Aiden also has been doing well...he has been put back on his feedings and hopefully he can be taken off his nasal cannula soon. I have also been able to do kangaroo care with him...

They both also have been gaining weight the last couple of days...Brayden is at 1lb 12oz and Aiden is at 2lbs 5oz...

I don't know if it's okay that I am glad that they are doing well bc I feel like if I am happy something is going to happen to them...but then I am not sure how to feel...I want them to keep getting better but every day I am afraid something bad is going to happen...so how do I get past this feeling? I don't know...

Oh and they are now 2 weeks old!

Well that's it for now...until next time...