Doctors Appointments

So, I haven't updated everyone in a while and I figured now would be a good time to do it! I have to say I don't know why they seem to think that 10 am is a great time for an appointment for an 8 month old with oxygen!! He usually doesn't wake up until 10 or 10:30, so he was less than happy about being awake! Last Thursday Tucker had his first appointment with the pulmonologist Dr Fong. They weighed him, he was 16 lbs even, measured his length 23.5 inches, and measured his head 38.5 cms (which is awesome because it is growing, it was 36 cms two weeks before this!). Dr. Fong saw us, listened to him and said that he sounded really clear which he was really happy about (everyone is telling us he doesn't sound like the same baby from a few months ago which is REALLY encouraging). I asked if he was going to adjust the dose of Tucker's diuretics for his weight since they hadn't been adjusted in almost a month, and he said no, as long as he was clear he was going to let him self wean off of them. In a little while he'll actively start weaning him off of them!! This was the best news, it means that his body is now able to keep the fluids out of his lungs better without the meds, it's a HUGE step for him. He also said that we'll wait a while and then start trying to wean him off of oxygen...but that he's encouraged with how well he's doing. He did say that he's a little concerned that he was gaining a little too much weight, he's been gaining between 30 to 35 grams (about an ounce) a day and they would like for him to be gaining between 20 and 25 grams. Hehe, I never thought I'd hear the day that he would be gaining too much weight, it was really kind of exciting!! So all in all it was a really good visit, minus the fact that he was cranky and in a bad mood when we left. He still isn't used to his car seat and just doesn't like it, I'm hoping that will change but since we don't go out a whole lot he's not really getting the chance to get used to it. OH, he agreed that he would like to get Tucker's G tube out as soon as possible, and actually watched him take a bottle and saw his new trick of gagging or choking on the bottle. He told me immediately that Tucker needs OT and speech therapy right away, although I have NO idea how they do speech therapy with an 8 month old, but hey I'm game to try anything!! He doesn't want Tucker to get nipple aversion, and he's afraid that is what could happen if he doesn't get OT soon.

This week we had the physical therapist come out to asess Tucker and see how badly he needs PT and how tight his muscles are what types of PT and so on. She was soo nice and really helpful and I trust her a lot with him. She gave me a lot of good tips on things to work on with him and little tricks to help stretch out his muscles. She's going to check out all of the information she took and send her recommendations off to regional center (who is going to help asess and decide what he needs in terms of PT, OT and everything like that), so we're waiting to hear from her. Yesterday he had an appointment with the G.I. doctor, he was weighed he's 16 lbs 8 ozs now, his head is 39 cms and he's 24 inches long....I was AMAZED!! And really, really excited about his head growth!! The doctor came in and got his history and started talking to me about everything that is going on with him. She agreed that he's gaining a little too much weight and that he's actually a little fat for his length, and when I told her the pulmonologist was concerned also she decided he no longer needs to be on the preemie 22 calorie formula....WOOO HOOO!!! That stuff is sooo freaking expensive, and not just that, but he's getting to be a BIG BOY!!! She also said that I should go ahead and give him one bottle of apple juice a day (thickened of course) and that he should be able to handle it. She also said to keep trying with the rice cereal and that he does probably need OT. She stopped one of his meds because it wasn't working and agrees that he needs to have an MRI in the very near future and is going to talk to his pedi about it. All in all it was a great visit, and he doesn't need to be seen for another 3 months. We have our appointment with regional center next week, they'll come out and get to know Tucker and decide what he needs.

All in all it's been a great few weeks, and Tucker is doing really well!! We're still working with him on moving since he's not rolling over or sitting up on his own yet...but we're hopeful that with the PT he'll be able to do it soon!! He's growing up so fast...I just can't believe it...he'll be a YEAR OLD in four months!!! Where did the time go?? OH and they said it would be fine for him to go swimming, so you better believe we're going to have a pool party for his first birthday!! If it's warm enough hehe. Anyway, that's all the news I have so far...I'll update after our appointment with regional center next week!! Thanks everyone for your continued love and support for Tucker and us!! I'm going to upload new pictures soon I promise!!

Merry Christmas!

So I wanted to wish everyone a Merry Christmas!!! And, to give everyone an update. Tucker came home on the 18th...and he's doing amazing!! We are so blessed to have our Christmas wish come true...our baby came home for Christmas!! Thank you to everyone who has been following our story and keeping us in your thoughts and prayers...we are so appreciative of all of your support...this wouldn't have happened without you!!! We are one of the lucky families, our baby came home and with all luck won't have to spend anymore time in the hospital, and I can't tell you how wonderful it is for him to be home. My heart still goes out to the families whose babies are still in the NICU, and I pray they will be home soon!

I was sitting tonight rocking Tucker to sleep (well attempting to at least, he didn't go to sleep until maybe an hour ago) and for no reason at all it all the sudden hit me that my baby was FINALLY home. He was throwing a fit, and I sat him on my knees facing me, and as soon as I did that he gave me the biggest smile, and it just melted my heart. I have never felt as much love as I did at that point. He's smiled at me before, but for whatever reason tonight it struck me to my core, and I just started crying. It finally all came out, the thoughts of how lucky I am, my baby is here, he's alive...the baby the doctors all said wouldn't make it, is HOME. He is my miracle...a true gift from God, and I started to wonder, what could I have possibly done in my life to deserve such a wonderful, beautiful gift? And then all the emotions of the NICU came flooding back, and all of the different stages of our stay came flooding back as well. Remembering him laying so tiny in that isolete, hooked up to so many different machines, with IVs and PIAs and all sorts of other things coming out of him. I lost it, I couldn't help it...all of the old fears came back, remembering all the nights I prayed my baby would make it through the night, and how terrified I was all the time I would get THE CALL. And as I sat there crying my eyes out, Tucker stared back at me, smiling and laughing, as if to say it's ok Mommy, I'm here! And I realized in that instant how lucky I am...how blessed my has been and will be with this amazing little boy in it. Yes, we still have setbacks, he's still on oxygen and we're still not sure what is going on with his head size and if he does in fact have cerebral palsy, but my baby is ALIVE...and to me, that is the greatest gift I could ever imagine. All of the tears, the sleepless nights, terrifying moments and prayers have led us to this moment...him being at home, with us, where he belongs! I have never in my life felt as proud as I have these past few weeks, especially the day we brought him home...the day some people said would never come, showing all of the specialists just how wrong they were. I heard a thousand times, babies like Tucker don't live...they just don't, and yet, here he is, thanks to a wonderful and loving God!

I pray that everyone finds peace and joy this holiday season...thank you all for your support and prayers! We are very blessed to have you in our lives!!

Tucker is Coming Home Soon!!!!

So, the doctor came by the other night and told me that they would be weaning Tucker's liter flow to 1 sometime this coming week, and after he's been stable on 1 for 7 days, WE CAN GO HOME!!! She said he would be home before Christmas...and I seriously think those were the last words I heard the rest of the day. Sooo excited...then I realized HOLY CRAP I only have like ten days until he's home....ummmm I really need to get going on his room and getting him stuff!!! Hehehe, nothing like waiting till the last minute!

With all of that said, there are a couple of things I'd like to ask. This is not me trying to be mean, it's just something that needs to be said before he comes home, remember he's still a micro preemie, his immune system and lungs are nowhere near what they should be! Please, if you feel even the slightest bit sick, even if you're not sure please don't come by to see him. What is a cold for us could be completely devastating for him. Little kids can't be around him, especially if they go to pre-school or daycare, they can't tell us when they feel sick, so they could have something without knowing it. Please don't smoke around the house or near him, not only is it bad for his lungs, but we're going to have pure oxygen in the house...we just can't take the chance of something happening. Please, please, please, wash your hands before coming over to play with him, I know babies have to build up their immune systems, but that will have to wait for him, his lungs are still so critical one small thing could send us back to the hospital. Please don't feel like I'm picking on anyone or being rude, if I am I'm sorry...I love you all, but I want to make sure this is the last time we're in the NICU, PICU or whatever.

I love you all...thank you all for all of your support and prayers, we're so excited to get him home!! Without you I know I would have lost my mind a long time ago!!!!

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!!