Saturday, December 22, 2012

1 step forward, 2 steps back!

Well... we were warned that we would have a few ups and downs while in the NICU and they weren't kidding! Just when we thought things were going awesome we had to take a few steps backwards :( Poor little Boston just can't catch a break!

"Bananas over mommy" 
not sure what face this is he is making but I love it ahah

Since the PICC line came out I got to put him in my fav preemie outfit!
monkey butt haha

He was doing so good for a while, he was just on room air and breathing really consistently and being such a strong boy! But since he hit 34 weeks and was doing so good, the doctors decided it was time to come off the caffeine (which helps preemie baby's breath in the beginning while their lungs mature) so they took it away from him cold turkey!! He did really well for a couple days and we were so excited that things were looking up but then the apneas made a come-back :( I HATE those things. He turns all blue and his heart rate drops like crazy and it scares him mom and dad to death! So he was quickly put back on caffeine which stinks because he has to be off the "juice" and apnea free for at least 10 days before we can even think of bringing him home and he will be on caffeine another week. 

Love this little face!!

He has been back on his cola for 2 days now and was still having some episodes so we got bumped up on oxygen again..... and since the apneas were back and not even better or less frequent while being back on caffeine, the doctors were a little concerned about another infection.... great.... so the poor little mister got his 4th spinal tap (which means mommy had another melt down) and some blood drawn to be sent off for cultures and checked for White Blood Cell counts. Which also means we got an IV back in and back on antibiotics for at least 2 days until the cultures come back negative. 

So sick and tired of all these tests and pokes!

We got the results back from the WBC counts though and they all looked great, so hopefully that means the cultures will be negative and we won't have to worry about an infection and can get that IV out soon! But it also scares mommy because that means we don't know why the apneas aren't going away. I really hope and pray he's not going to have breathing problems forever because of the meningitis.... I am hoping it was just to early to come off caffeine and it is just taking a while to kick back in again. And I REALLY hope it's just cuz his lungs need a little more time to mature and that we can bring him home soon....

All these pics are before all the new are tubes back on. And he was not very impressed here that I unwrapped him haha. he was so cozy. 

He did have an eye exam and his eyes are matured and looking good... phew! They told us blindness was a big possibility so this was a HUGE relief! 

Diaper change! They are starting to be pretty nasty haha. He is eating really good and gaining weight like crazy!!! He is now 4lbs 15.5 ounces... almost to the 5lbs mark yay!! 

Loves to chew his fingers and stretch his little toes out!

Boston is such a tough little guy and has been such a champ through all this. The 2nd MRI results were not good… from the looks of the pictures about 1/3 of his brain is dead from the meningitis. That was a REALLY hard few days. They told us he may never have the ability to "learn" which means no walking, talking, much of anything really. So that was terrible news as you can imagine. But after a few days to soak it all in I am doing better and we are still just going to wait and see what happens when he grows up! But one thing is for sure we will love him to death either way. The developmental specialists are very impressed with how alert and strong he is so that was great to hear :) He is catching on to feedings a lot earlier than they expected too! We have heard that boys can be slower an stubborn with the lung issues so we will just pray that is all it is, he just needs a little more time is all!! But I wish he would hurry up and get over this apnea thing, I am really sick of getting new room mates and seeing them leave before us! Not fair!

But Christmas is right around the corner! I can't believe we have a baby to celebrate with haha, it is going to be a different holiday than Brian and I are used to (us spending it in the hospital and wishing we were in Hawaii with everyone else) But it will be a special Christmas too that we will always remember. We have gotten the best Christmas present we could ask for, a beautiful little boy!! We just love him to death :) 


  1. I love him!!! I read your blog faithfully , and I must say he is looking so good , I was just thinking how big he is looking and then you say he is almost 5 pounds and I think .. WHAT thats so tiny!! but he is looking so good.... Merry Christmas to your new wonderful family .. I hope you guys have a Christmas full of love and lots of peace and hope!! were praying for you guys !

    1. thanks megan! He is looking really good so hopefully we can just get over this breathing stuff soon! Thanks for checking up on us and for the prayers, we really appreciate everyone being so thoughtful and loving towards Boston, we love him lots too!! Merry Christmas to your adorable family!! Miss you guys :)