Exciting News!!

So tonight at the hospital, the doctor came by and told me I needed to find a pediatrician, and that I needed to put Tucker's room together because it won't be too much longer until he was home!! She said next week we'll wean him to 2 liters of flow, and if he tolerates that he'll be weaned to 1 liter, and as soon as he's been stable on 1 liter for one to two weeks he'll be able to come home!! We're so close...I was so excited to hear that, his nurses have thought he might be coming home soon, but we haven't had a doctor tell us that!!!! Thank you to everyone who has been thinking of us and praying for us....I was so happy to hear it I started crying...I just didn't know when I'd finally hear those words! I will be posting more when I know more, but so far he's doing great!!! We're super excited, hopefully he'll be our present under our Christmas tree!!!

Tucker's Surgery

Tucker had his surgery today, he went in around 1:30 and was in for about three hours. He was able to be extubated (off the ventilator) right after his surgery which is HUGE. We're so proud of him!!! He's done so well everyone couldn't be more pleasantly surprised. He's on lower oxygen than he was before the surgery which is great, so hopefully this is the change in the right direction that we needed. He's such an amazing boy!!! We'll see how he's doing tomorrow...but so far he's good, besides being incredibly mad about not being able to eat!!! I will keep you all updated on how he's doing!!

Tucker

Thought I'd write a quick note. Just so everyone knows...Tucker is now 6 months old, (as of yesterday) and 13 pounds. Yeah, he's huge! He's going to have surgery next week to give him a G-Tube, and fix his hernia. I don't think he'll be able to get his MRI the same day, but we can always do it later, it's not as important as his surgery. We're hoping once they do this surgery things will get better and we'll be able to get him home soon. I do have to say that I'm nervous about the surgery, they will have to sedate him and put him on a ventilator, and we're praying he'll be able to come off of it the same day. This is the biggest risk with doing this surgery, how long he'll have to stay on the ventilator. It's been a long 6 months, and I'm just praying we can get him home before Christmas, I can handle a lot, but I just don't think I can handle having him in the NICU at Christmastime. Thank you again to everyone who has been praying for us and thinking about us. Hopefully we'll be able to post pictures of him at home soon!!

Need some advice...

So I thought I'd right a quick update and get everyone's opinions on some choices I need to make. First of all Tucker is doing really well. He's now 11 pounds, and becoming more and more active and alert, he smiles now at us...it's wonderful! He's been doing so well that they started letting us give him bottles, he gets two a day and can only take up to 20 mLs, which isn't even a full ounce, but hey you gotta start somewhere!! We've had some hard news, his head wasn't really growing and they were concerned so they decided to do a head ultrasound and found that the ventricles in his brain are enlarged, indicating that his brain is either atrophied or isn't growing properly, but they don't know why. They won't be able to tell until they do an MRI, but they need to wait until he's stronger because they'll have to sedate him to do it. Even with the MRI they might not know why this is happening, and they can't say for sure what kind of problems it will cause or if it will resolve itself. It's another long game of wait and see...but the good news is, he hasn't missed any milestones, and he's got great muscle tone which is awesome! It's just one of those things that is always in the back of your head and you can't shake it off. No matter what happens he's a wonderful beautiful baby, and I'm so blessed to have him, nothing could change how much we love him. He's perfect in our eyes...our own true miracle! He's now on high flow all the time, except for six hours when he's on CPAP but that's a HUGE accomplishment. I have new pictures I'll be putting up soon...he's gotten so big that those of you who have seen him would swear he's a different baby!

Now for the choices I have to make that I need some help with. Some of you know that I was supposed to start at St Mary's this January, but of course with everything going on with Tucker I wasn't able to finish what I needed to to start. Now looking back, I'm not sure if teaching is what I really want to do. Being in the NICU has given me a totally different outlook, and I'm wondering if maybe nursing would be something I could do, or even a respiratory therapist, and again maybe social work. I've been debating these three different possibilities, and I just don't know. No one seems to think that I'd be able to handle being a nurse or an RT, and I don't know maybe I couldn't...but being around babies who need help, it makes me want to learn to help them. I'm a little squeamish so I'd have to get over that in a hurry, but the thought of being able to help give a family hope or comfort or whatever makes me really happy. And to be able to really help them because I know where they're coming from makes me think I can handle it. Now I'm rambling...but I had to put this down before it drove me mad, I'm opening myself up for opinions...please share what you think with me, I welcome all the advice I can get!!! Thank you again to everyone who is following and sharing in our story...we love you!!

Much needed update...

Sorry it's been so long since I've updated everyone...the past month has been HECTIC!! First of all, they stopped letting Tucker have nasal canula or high flow breaks because he wasn't really tolerating them very well. After all this, we had a meeting with Tucker's doctor, nurses and just about everyone else concerned with Tucker to talk about his continued treatment. Dr Durand was so happy with how Tucker is doing that he gave us the timeline of Christmas to come home!!! Well sometime around there...it's so exciting, a month and a half ago they wouldn't even give us a timeline and now they're saying Christmas...SO EXCITING!! Anyway, after a few weeks of no sprints on anything they decided to allow him to go back on high flow sprints, and he's doing great!!! We had a few problems with doctors making ridiculous decisions (he has two primary care doctors now, and these were NOT his primary doctors). But now we're doing good!! He's getting onto bolus feeds, they're going in over an hour right now and they're hoping to get it down to thirty minutes every three hours (he's still being fed by a tube in his stomach), but still it'll be great to get him on regular feedings!! He is gaining weight steadily which is great...actually he's shooting up in weight...9 pounds 5 ounces!!! He's such a little piggy...it's great! He's started acting more like a baby, being awake and hanging out, looking around and liking to be in his swing! He's such an amazing little boy...everyone in the NICU is amazed by him...he is truly my miracle baby. I am the most blessed woman, I have a wonderful husband and a beautiful baby boy!! (Oh and not only can he make his alarms go off...he can also cry...and I mean CRY!!!!) One of the nurses asked me if it bothered me to hear him cry, and I said no, after three months of not hearing a peep out of him it's wonderful to hear his little voice, well BIG voice actually! His coming home will be the most wonderful Christmas gift I can think of...it would make my year!! Thank you to everyone who has followed along with Tucker's story, and who have kept him and us in their thoughts and prayers...we love you all for it!! Anyway, that's our news!!! We're completely thrilled with all of it...and we just pray that he will continue to do as well as he has been!!

Good News!!!

So tonight we were at the hospital with Tucker and they decided to give him a break from the CPAP by putting him on a nasal canula. He did so well that they've decided to allow him to stay on it as long as he tolerates it!! This is HUGE he skipped the high flow and went to nasal canula...he's doing pretty well considering...we're very proud of him. He's an amazing little boy...even the Resident was amazed by how well he's doing. There's no guarantee that he's going to be able to stay on it but still the fact that he's been on it for almost six hours and is pretty stable it's definitely a good sign!! Everyone in the NICU is amazed by how well he's doing...two months ago we weren't sure if we'd be able to get him here...and now look at him!!! Things could change of course and we understand that but we're so excited by how well he's doing!! He's such a miracle from a loving and wonderful God. We're just praying that he continues doing well!

Update!

So yesterday at 2 they finally took Tucker off of the ventilator!!! YAY!!! It's been a long time coming...and we finally got to hear his little voice!! It's a little weak and raspy right now but definitely not for lack of trying...he's gotta get his little vocal chords used to working and get them and his little lungs strong enough to let him really cry. But he's found his voice and he's not afraid to let everyone know about it!!! He did great when they put him onto the CPAP...he didn't drop his heart rate or his oxygen saturation, he did perfect. He just opened up his beautiful little eyes and got a good look at his new world without that stupid tube! If he continues doing well throughout tonight and tomorrow and can prove that he won't need to go back on the ventilator then they'll even give him his own little crib!!! Which is a VERY exciting thing for us! This day has been so wonderful there just aren't enough words...I am FINALLY able to pick him up on my own without nurses and RT's (not that I don't love them) to help me, and I don't have to have his tube taped to my gown...I can reposition him on my own if I need to and I can even move him from one arm to the other!! He can sit up and be burped, and do all sorts of big boy things....and I feel even more like his Mommy...i can pick him up to put his clothes on him and swaddle him and it's just the most beautiful feeling. I really can't describe it. I think it's brought the two of us even closer...I hold him now and he opens his eyes and looks at me and can move his little head around to get a good look at the world around him...it's beautiful to see it!! He's so perfect and I am so blessed to have such a special little boy as my son. God has given me such a precious gift and I thank Him for Tucker everyday of my life. I have tons of pictures and I'll post them later I just got home from the hospital and I'm BEAT!!!! There will be more later when I can think straight!!!