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!!

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!!!

Exciting News!!

Well to catch everyone up...Tucker had another infection that kinda caught us off guard on Thursday night...but we caught it really early so he was back to his normal adorable self by Friday night! They were going to try Friday to put him on the CPAP, but because of the infection they decided against it. They were maybe going to try it today but it didn't end up happening, they decided to try weaning his ventilator and he seemed to do pretty well with it. They have decided that tomorrow will be the big day to try taking him off of the ventilator and onto CPAP!!! This has been a long day coming but we are so excited and happy that he's doing well enough to try it. They also took his broviac out on Friday...they think that was part of why he was getting so many infections and he really didn't need it anymore...he's getting all of his nutrition through breast milk that they fortify with calories and such...he's on full feeds and he definitely loves his milk...what can I say my kid's a piggy!!! Thank you all for following along with what is going on with our little man...you've shown us what true friendship is and we are so blessed to have such wonderful people in our lives!!! I'll post more tomorrow when I can and let you know how it goes...our love to everyone! Thank you again!!!

All our love,
Audra, Danny and Tucker

I Forgot...

We've been able to hold him everyday this week!! So have my parents, and he loves it! Now he lays there and looks around and just checks out everything around him. He even lays on his little table and checks everything out...you can just see what a difference a couple weeks has made!! He's such an amazing little boy...God has blessed us in such wonderful ways!!

Good Days

So I thought I'd update everyone on what's going on with Tucker. The doctors decided to try another round of steroids (third time's a charm) to see if it could help his little lungs out so they could wean his ventilator settings and get him on CPAP (continuous positive airway pressure) it's what people with sleep apnea wear, it basically pushes air into his lungs constantly (that's a really really rough explanation of what it does) but you get the picture. So far it's been working really well...they've been able to wean him a lot on the pressures which is great, and they're talking about taking his broviac line out. That's HUGE, it means that he no longer has any lines, so the only thing we're focusing on is getting his little lungs working for him better. The past few days and nights he's been doing sooo much better, it's amazing!! His oxygen concentration has been down as low as 40%, which hasn't happened in weeks. His pressures are still pretty high but the fact they've been able to wean as much as they have and he's been able to tolerate it is just amazing. He's up to 50 mLs of milk every three hours (it's almost 2 ozs) and he's growing fast!! Some of the preemie outfits I have for him are too small now...which makes me happy and sad at the same time...just cuz they were soo cute! All in all this week has been a wonderful week...he has shown just how tough and strong he can be, he's still not out of the woods but I think (I haven't heard this from the doctor yet) that he might be on his way to getting better. I just pray that once they stop the steroids he's able to keep this up!! Today is his last day before they start weaning them, so we're keeping our fingers crossed this was the boost he needed and he can start doing it on his own! I have to say though that we are very blessed that he's turned around so fast. They haven't talked about taking the breathing tube out just yet and putting him on CPAP, I don't know when they're going to try to do it...I'm waiting for the doctor to go on rounds so I can call back and see what he says!! I'll update more when I know more. Thank you all for your prayers and thoughts...your support is what's getting us through this! We love you all!!!

Wonderful Moments!!

Sorry it's been so long since I've updated everyone but things have definitely been hoppin around here. Today they decided to try Tucker on the conventional ventilator to see how he'd do...and he did pretty well actually. He did give us some scares with some pretty serious de-sats, but most of them were caused by his wiggling or just getting mad for one reason or another. My Mom, Danny and I rushed over to the hospital because I was determined to hold him before they put him back on the high frequency (because that seems to have been our luck). I waited all day and they kept saying well if he can stay stable for an hour then you can (they obviously had never met my son before!!) Finally, I looked at his nurse Rebecca and I just said please, I need to hold him because I'm almost positive they're going to put him back on the oscilator, and I couldn't help but cry thinking about it. I think she knew I was desperate so she talked to the charge nurse and Christina the respiratory therapist (who is wonderful!!!) and they agreed that we could do it once they had given him more morphine and a dose of ativan. Everyone was nervous (including me) because he had just been so up and down...but they were willing to try and I love them so much for it! He did de-sat as they got him ready and moved him to me, but once I was holding him he calmed down a lot. At first I just cradled him like you would any baby, (and he gave me such big smiles!!!) but I could tell he wasn't totally comfortable, so I talked them into letting me hold him in the Kangaroo position, which is skin to skin upright on your chest. THE BEST FEELING A MOTHER CAN HAVE!!! Once he got there, he pretty much stopped having de-sats...he would have little ones here and there but not as significant as they had been. There are absolutely no words to describe how it feels to hold a baby you thought for sure you were going to lose (on more than one occassion), I don't think any feeling will ever top it. To feel his little body and know that for once I was the one person who could give him comfort and could tell almost exactly what was going on with him is something I wish everyone could feel...not for these reasons though! Holding him makes everything we've gone through seem so small...it's such a huge accomplishment for him, and it feels wonderful for both of us, at least it seems to for him. He felt completely relaxed and calm, and even when he'd start to tense up I'd take his little hand and just kiss his little head and talk to him and it seemed to help, and there is nothing that tops that feeling. He is such a little wonder...he is the true meaning of strength, anyone who has seen what he's been through will agree I think. He continues to prove the doctors wrong...everyone assumed his blood gas would be horrible tonight because of all of his bad episodes, and yet it was a pretty good one, and that's all I can ask for. He has made me so proud, and I know that no matter what happens God has wonderful things planned for him! He is a true miracle and his will to fight and live is something I never thought I'd be privilieged enough to see. He has made my life so bright and wonderful, it's a feeling I'll never be able to describe. We are so lucky to have such wonderful nurses, doctors and respiratory therapists working with him, who are willing to do this for us...they will forever be in our hearts!!!

Reality Check...

I was about to sit down and write out how frustrated I was and how today had definitely not been the best day, when I opened my myspace account and found this email...

We do not know each other, I just happen to come across your page but I felt the need to let you know that your story has touched my heart. I can see the strength you carry for your little boy and I admire you so much for that. I have a 2 year old son and a 2 month old son and seeing your pictures made me realize what a true blessing I have and how I need to stop and appreicate the gift of life more often and not take it for granted. I am praying VERY VERY hard for you, your family, and most of all baby Tucker. I will continue to pray for him daily....God can work miracles...you just have to believe.

It made me stop, smile and cry. This person I don't even know was wonderful enough to remind me that no matter what happens I have been blessed with the joy of a beautiful baby. If there is anything to come from Tucker's story, it's what she said. We have been blessed in other ways from what we're going through, we have met wonderful people even though it's for the worst possible reason, and I will never forget them or what they've done for us. This last week has been really hard, with too many ups and downs...but we're so blessed to have so many people who in a sense are going through this with us, just because of how much they care about us and Tucker. We're very lucky for that...and Danny and I are lucky to have each other, and tomorrow will be our one year anniversary. I still can't believe it's been a year already. It has been a year of huge ups and downs, but I know it's brought us closer together. I am such a lucky woman to have such a wonderful man as my husband, and Tucker is lucky to have such a wonderful Daddy, who is completely devoted to him. I just can't wait until Tucker is home and our family is complete. Our lives have been so blessed by Tucker, even through the hard times and even when we weren't sure if he was going to make it...he has taught us so much, and we love him with everything we have. Our world is wrapped up in that beautiful little boy, and we are lucky to have him. No matter what happens, our lives have been made brighter because of him...we've experienced unconditional love, and it's such a wonderful, beautiful thing. I pray that everyone is touched by the love of a baby at some point in their lives...there is nothing more special than it.

Long Days...

Right now I'm sitting in the waiting room at Children's while they do a Lumbar puncture on Tucker. They did an EEG for a few hours to make sure the phenobarbytol (which they gave him three doses of before it took effect) was working. He finally stopped having seizures, and they did the ultrasound on his head to make sure the seizures weren't caused by something going on in his brain. The ultrasound looked good, so their next option was to do the Lumbar puncture to rule out meningitis, because it is possible that the seizures were caused by the infection itself and not because it turned into meningitis. So now we're waiting for them to finish the puncture, which could take two to three tries. They'll know the preliminary results within three hours, and they'll know the definite results within 24 hours. This is the last thing I wanted to happen to my son...I heard another family talking about their baby having to have one done and it scared me to death. We have a wonderful nurse and nurses and doctors, who are going to be doing this so we have a lot of faith in them. On a little happier note, when they took all of the electrodes off of his head after the EEG they let me wash his little head and he loved it!! His sats went up and he was moving his little leg, which is good, yesterday and earlier today he was so sick he didn't even feel like moving and wasn't even trying to. We're very lucky for at least that. We're keeping our fingers crossed and hoping and praying for the best. Thank you for all of your support and prayers, we're very lucky!!!

Hard Days

Yesterday was one of the worst days we've had with Tucker, I called the hospital around 10 am and they told me he was on 100 percent oxygen and his oxygen saturation was that great...so we rushed to the hospital and what we found was that he was saturating in the 50s and 60s which is horrible, they switched him around on ventilators and added nitric oxide and his saturation went way up. Then they found that he had an infection in his blood stream, and that he might have a pneumonia. He had two hours worth of milk in his tummy that was un-digested which isn't good at all, so they pulled it all out. He started getting a little better with all the changes and the anti-biotics, so we felt comfortable going home. I just called today and his nurse told me that they think he might be having seizures, he stiffens up and his heart rate and blood pressure zoom up and then when he relaxes he de-sats. They're doing an EEG right now to check his brain, and they're afraid the infection may have gone to his spinal fluid and turned into a type of meningitis, so they're going to do a Lumbar puncture (spinal tap) to check, if he can tolerate it.

I thought when I walked in yesterday that he was dead or dying, and now I don't know what to think about today, I thought by last night they probably had the infection under control because he seemed to be acting a little better. When we first got there he would kind of squeeze my finger but he wasn't moving or opening his eyes, by the time we left he was opening his eyes a little bit and moving a little bit. I don't know what's going to happen today, I really don't want them to do the Lumbar puncture, it scares me so much, but I know if they don't it could kill him. I'm worried about the long term effects of these kind of infections and just everything really...and I don't even know if he'll make it through all of this. And through it all I just want to hold him and comfort him and make him better and there's absolutely nothing I can do and it just tears me apart to know that. I'm so afraid the next time I hold him won't be because he's doing well...and that scares me because I'm not ready to let go of him yet, to lose him. I know that whatever God decides is for the best, and I will cherish every second I've had with him but I'm not ready. I just wanted so badly for everything to go perfectly for him, to get him to where I could hold him all the time and let him know how much I love him, and how much faith I have in him. I just don't know what God wants or what he's going to do...I pray that he'll let me be his Mommy and take him home and do all the things little boys are supposed to do. I just don't know....I am so lucky to have had as much time with him as I have, and to have gotten to hold him. I am thankful for that everyday...and I pray that he'll get through this and we'll take him home and be a family. I don't doubt Tucker, I know he's a fighter and he's tough, but I'm worried that this might be more than he can fight back against. We're about to head to the hospital...I'll write more later.

Today

Well, we didn't get to hold Tucker today. We got to the hospital and were kind of heart broken to see that they had put him back on the Jet ventilator. I guess they only had him on the conventional ventilator for an hour, they had to keep going up on the pressures and they were afraid to keep raising them because his left lung could become over expanded again. They did an x-ray and a blood gas to make sure that this little experiment didn't make his lungs worse, and it didn't so they're very happy about that. They had to try, and he's just not ready yet. The doctor did tell us that he was really surprised at how much they're able to feed him, usually babies or grown ups for that matter who are as sick as he is won't eat...so that's great to know! I was really sad, I was so looking forward to holding him, it just feels like forever since I've held him...and it's starting to feel like it might be forever until I can again. I'm so sad for him, I know how hard he's trying, and I just wish they could do more or I could do something to help get him off of the ventilator completely. It doesn't help that I'm exhausted, everything seems to be multiplied when I'm sleepy. They're talking about taking his broviak tube out, which is what was giving him his lipids and proteins, and since he's not getting them anymore it would be better to get all of his lines out, less chances of infections that way. Once they stop his anti-biotic they'll really be trying to get the tube out. That would be great, one less thing to worry about, and one less thing he'll get tangled up in. Anyways, that's todays update...maybe in a couple weeks...we'll just have to see. Thanks for all your support and comments!! I'll let you know more when I hear it!!

Quick, quick update!

Danny called the hospital this morning and was told that Tucker has been doing so well that they decided to try putting him on the conventional ventilator to see how he does! That means WE CAN HOLD HIM!!! They think he might do well on the conventional, if not they'll put him back on the Jet and try again in a little while. He's up to 10cc every hour of breast milk, no more IV proteins or lipids YAY!!! He had what's called a P.I.A which is a line that goes directly into his artery and monitors his blood pressure, and where they could take blood from without having to stick him all the time, and it came out yesterday...but since they're only getting blood gases twice a day they're not going to put another one in!!! One less line we have to worry about!!!! They've discontinued getting x-rays every morning, they didn't feel the need to continue that...which is so great. We're heading to the hospital in a few minutes, if they let us hold him today be looking for pictures tonight!!!! Thank you all again for your thoughts and prayers...without them I don't think he'd be half as strong as he is!!! We love all of you!!! I'll post more later!

Good/Bad Day

Sunday was a horrible day...not for us, but for another family in the NICU. Sunday afternoon Jeremiah, the little boy next to Tucker, passed away. Danny was there when it happened but wasn't sure what was going on, and didn't want to say anything to me and upset me. He called my Dad and told him what he thought had happened and my Dad rushed to beat me to the hospital so I wouldn't be alone. I didn't know what was going on, but I saw a nurse with a baby's footprints on a sheet saying Remembering Our Baby, and I knew something horrible had happened. When I told my Dad he told me it was Jeremiah, and my heart just broke for his family. He was a beautiful little six month old baby, with the biggest eyes and longest eyelashes I've ever seen. I didn't really talk to his family much, I talked once for a few seconds with his Dad, but his Dad was amazing with him. He would come and hold him for hours, talking to him and making funny faces, it was beautiful to see a man so devoted to his son. I had no idea Jeremiah was that sick, to hear his Dad talk made me think he was on his way to going home, so when I found out it just broke my heart. It's like Tucker's nurse told me...babies aren't supposed to die. And it's so true, they are beautiful and to see that happen is such a heart wrenching experience. I was there when his parents came back from the chapel with him and all I wanted to do was to go to them and hug them, I don't even know them but I just wanted them to know how much I hurt for them. It's what all of the parents (nurses and doctors too) dread and fear more than anything, and when you see another family going through it it makes it that much more real and scary. I don't mean to break everyone's heart and if you stop reading now I don't blame you but I have to get this out, it's all I can think about and even now I'm still crying. That night all I wanted to do was to hold my son, to know that he's ok and that he'll be ok and I couldn't do any of that. I had been kind of short with his nurse Andrea all night (she's his primary and has him whenever she's there and I absolutely adore her) and I finally had to explain to her how sorry I was to act that way but my biggest fear is that I don't want that to be the reason why I hold Tucker the next time. It's always been my fear and in the back of my mind...I started crying and she put her hand on my arm and promised me that would not be the next time I held him...no matter what. And I know she means it...it's that thought that I can never shake, that never completely disappears. I was sitting at Tucker's incubator, listening to Jeremiah's parents talk and cry, and I was looking at my beautiful little boy and thanking God that he was here and for every second I've had with him, and asking God to be with Jeremiah's parents and family. I can't imagine what they're going through, and it breaks my heart not to be able to help. I think it was one of the saddest days of my life. I sat there and watched the nurses pack all of his toys and clothes for his parents, and then I watched them take that beautiful baby away and the thought of never seeing him again hurt so badly. I watched them take away his crib and everything else, and when it was all gone there was just this empty space...and it scared and saddened me. Even today it was so hard to look over and not see a crib there. They had to move all the babies in his NICU room around because they were cleaning the floors, and when I asked if they would take Tucker back to where he had been before they told me they were thinking about putting him in the corner (where Jeremiah had been) and I looked at them and told them no. They all looked at me and said you don't want to be in the corner, and I said no, not after what happened yesterday. It's not that I'm afraid that by being there that will happen to Tucker, it's just that it's too soon...Jeremiah had been there for the entire time Tucker has been there and it just didn't feel right. I know they'll put another baby there and that they have to put babies where they think it will work best, but I just couldn't have it be mine. Maybe it sounds dumb or stupid, and maybe it is...but I just couldn't do it. Please, keep Jeremiah and his family in your thoughts and prayers...I know I ask a lot, but please do this one last thing for me...and for them. I'm sorry I rambled on for so long but I just needed to get it out.

I don't want to jump from very sad to happy news, especially with what I just told you, it makes me feel guilty to know that Tucker is doing better with what happened to Jeremiah. Two weeks ago I really thought we might lose him...and in the last two weeks things have changed so much. A new neonatologist came into the NICU this past week (they rotate between Children's, John Muir and Alta Bates) and he thought they might try to push in Tucker's breathing tube again. This time though they wouldn't push it all the way into his right lung...they would just push it in a little too far and see how he did. So they did, I honestly couldn't tell you what day they did it because it's all blurred together...and we all held our breath to see what would happen. Thankfully, he tolerated it for about 30 hours, which they were so happy about, and after 30 hours they pulled it back, but not all the way back, just a little bit further out. They left it like that for another half a day or a day and he did pretty good like that. Then the wonderful thing happened (this may sound weird but stay with me and I'll explain it) his left lung collapsed finally!! This is good because the alternative was that it would tear and leak air into his chest, which then they would have to put in a tube to get the air out. The plan was to very gently and slowly re-inflate his left lung, they didn't want to use high pressures because as before it would just cause it to over expand again. Luckily, it's been working beautifully!! HIs right lung (which had been partially collapsed) opened up like it should, and his left lung is open again, and I can't remember if it's the right size or a little too big, all I know is that they are VERY happy about how it looks now. There used to be small pockets of air that you could see on his x-ray, and now I think there's only one or two (don't quote me on this, it's been a long few days and I really can't keep everything straight). His lungs are still very sick, so he's not completely out of the woods, but everyone feels better about how he's doing...they keep telling us at least he's going in the RIGHT direction now!! For three days he had great blood gases so they weaned his pressure down today, and then he had another really good gas so they weaned him again...twice in one day!!! Their goal is to get him off of the Jet (high frequency) ventilator and onto the conventional. They started his feedings again with breast milk, and this time instead of doing it every three hours they pump it in every hour. He is up to 9 cc every hour...they put it on a pump and it very slowly pumps it in over an hour. He is doing so well with it and they have him on enough that they stopped giving him the lipids and his protein mix...he is now getting all of his nutrition through the milk which is HUGE!!! It's two less things going through an IV, and they are thrilled about that. They would much rather fortify breast milk than give him IV nutrition...so we are very, very proud of Tucker. Every time I look at him it reminds me of how lucky I am, to have such a strong determined, beautiful little boy. He's been opening his eyes a lot more and looking around, and he's even been smiling!! I got to give him a sponge bath the other day, which made me so happy, it makes me feel more like his Mommy and like I'm doing things for him. He is also sucking on his breathing tube...which is great, that means he knows how to do it, and usually when it gets to the end of his hour's worth of milk and they start a new one he'll suck, which is good because that means he's learning that that's what he needs to do!!! They didn't have a binkie for him at first so I would give him my finger and he started sucking on it...which made his nurse Nancy and I super excited!!! They found him a binkie and I gave it to him and he kinda liked it...and then yesterday he actually sucked on it for about 15 minutes...I had to hold it because he doesn't quite get how to keep it in his mouth...and it's kinda hard with the breathing tube and his feeding tube in there too!!! Now when he starts wiggling a lot or just seems to be a little restless I give him his binkie and it calms him down and he settles back in for the most part. It just makes me so happy to see the progress he's making. It's baby steps but we couldn't be happier...I have an amazing son!! He likes to hold Mommy's fingers and he likes to hear my read to him, and I love to do it, sometimes he'll even open his little eyes and look around while I'm reading or talking to him, and that makes me even happier. I've kind of spoiled him, I bring him super soft blankies to sleep on, which the nurses are great about putting under him, so now he doesn't like the itchy hospital blankets...so I've been buying to softest ones I can find...I figure if he can't wear clothes yet at least he can lay on something soft!! I try to sleep with them before I take them in, all of his nurses told us to do it, that way he knows my smell and it's another form of comfort. I'm filling up his drawers with stuff!! I keep apologizing about it but I think they like the fact that I want to bring him things, I even put up pictures of when I held him...the one with all three of us, and the one of just him and I, and a picture of Danny and I from his friend's wedding. My Nana came up to see him, and she is so adorable with him, she starts to choke up when she leaves him and when she talks about him, which makes most of the nurses choke up too. My Grandma just had a pacemaker put in the other day, and she's doing fantastic...they gave her a little teddy bear so she named it Tucker and kept it with her the whole time she was in the hospital and held it on the way home. She wants to give it to him, and is so excited about coming to see him...we have such a wonderful family, we are truly blessed!! Tucker is now 6 weeks old and weighs 3 pounds 12 ounces, he makes me so proud!! When I go to buy him things people ask me who I'm buying it for and such and I love to tell his story...and most people tell me they get goosebumps as I'm telling them. He's such a remarkable little boy...I tell his story because I hope it will help anyone who is told what we were told. I hope it will help them to not give up hope on their child...to give them the chance and see what they can do. I can't say it will always end this way, and I don't know how Tucker's story will end...or if it will keep going, but at least we gave him the chance, and we did everything we could to help him. I want people to think about that, to think of him, and to give their child the chance to see what they can do! Now maybe some people can't deal with the uncertainty, and I completely understand that...but maybe hearing what he's gone and going through and how hard he's fought, just maybe they'll want to see what their child can do. That's all I want...is for his story to help whoever it can. I think that's why he's here, and he'll be a stronger child and man because of it. No matter what happens, we are so lucky that he's been with us for as long as he has, and has brought so much joy into our lives, and there is no better feeling than that. Ok, I'm sorry I've rambled on for waay too long, and if no one reads this I don't blame them!!! Lol. Thank you all again for caring enough to take the time to read the posts about him, and to pray for him and think about him. I say it a lot but we are so blessed to have so many people who care...we love you all for it!!!

Rough Day...

Thank you to everyone who has been following along...I decided it was easier and faster for everyone (especially me since I'm beat), if I just posted a note about this. Today was a really rough day...probably one of the worst we've had so far. They pushed Tucker's breathing tube in too far to collapse his lung on purpose. He tolerated it for a while, and his left lung did start to collapse some, but he stopped tolerating it and his blood gases were HORRIBLE. So, they pulled the tube back to where it had been and within an hour his left lung was worse than it was before...I saw the x-ray and his left lung was so over inflated it took up most of his chest...which was really scary. He looked awful also...and his oxygen saturation was horrible and he was on 100% oxygen which is not good. And all day his blood pressure had been really low and his heart rate was really high, which he's never had a problem with before. They were giving him drugs to help with his blood pressure but nothing seemed to be working. It was the first time that I've been really scared that we were going to lose him...and I think it was the first time the doctors and his nurses felt that way also. I honestly didn't know if he was going to make it through the night. They adjusted some of the settings on his ventilator and he started coming back around...his color got better, his blood pressure started to go up and stay up and his heart rate started coming down, his oxygen saturation went way up and they were able to start weaning him down on his oxygen concentration. He's doing much much better, but he's still not out of the woods...his x-ray at 8 looked about the same, if not maybe a little bit better. But when we left at like 9 or so he was down to 21% oxygen concentration which is great...21% is what we breathe...it's room air so they were very happy about that. Now the biggest thing is if his lung doesn't start to shrink in size or if it gets bigger...it could tear and leak air into his chest (it would also cause his lung to collapse), and they would have to put a tube in his chest to get the air out. I'm praying it doesn't come to that because I really don't think he'll be able to make it with one good lung...he was having a hard time with it today...his oxygen saturation never went over 80 which isn't good. Some day I'll explain all of these terms I promise for anyone who doesn't know. Today is not that day though because like I said before I'm absolutely exhausted. That's all I know right now, if anything changes I'll post another update. Thank you for all of your prayers and your support. I don't know how we would make it through this without all of you. You have been wonderful and I couldn't ask for better friends and family. Thank you again everyone, we love you!!

Quick Update...

It's been a while since I updated everyone on how Tucker is, and unfortunately I don't have a lot of time to go into great detail about what is going on. The doctor called Danny about twenty minutes ago and told him that he is going to purposefully collapse Tucker's left lung...it's getting over inflated again and they worry that it could cause it to tear and leak air into his chest cavity. They collapse it by pushing his breathing tube too far down, which pushes it into his right lung and then the ventilator is ventilating only his right lung and not both. They leave it like this for a day to let his lung collapse a little bit, as long as he tolerates it. If he doesn't tolerate it they pull the tube back to where it was before they tried it and I don't know what we do from there...this had been an option a few days ago but his lungs started to look better. This morning however his x ray didn't look very good I guess. I'm about to leave for the hospital but I wanted to update everyone and to ask that you say a prayer that this will go ok, or that something will change and his lungs will look a little better. Thank you for all your support and for reading all of the blogs I post about him...it means a lot to us. I'll update more when I get home...

Another update on our little one...

I'm sorry it's taken me so long to update everyone but the last few days have been up and down. Sunday night Tucker had a bad night and by Monday morning they did an x-ray which showed that the high frequency ventilator he was on was really irritating and scarring his lungs...which freaked me out of course. The doctor said this is expected with preemies, especially ones as little as he is. So they moved him onto a jet ventilator, which is much gentler on his lungs, with the same amount if not a little less pressure to keep them open. The upper lobe of his right lung had collapsed a little bit and when they put him on his back, it helped to open it up and keep it open. We're really happy about that!! Because he's on the jet now they can't move him back to John Muir, they don't have this kind of machine there, and he's not stable enough to be moved. They're guessing he'll be at Children's for at least a month if not longer. A little sad about that. He's not tolerating being touched as well...but they encourage us to let him find our hands, because even though it does make his oxygen saturation drop a little bit, he needs to have some stimulation, I'm guessing this will help the development of his nervous system? Or at least let him know he's not alone. I don't know why but I love touching his little feet so it makes me very happy. They didn't know why he was having such a bad night on Sunday, they were worried he had a bacterial infection (we're still waiting for word on that) or that he needed another transfusion. His hemoglobin must have been low because they gave him the transfusion and he's been doing much better since. He had a good night last night and a good day today. They've been feeding him through the tube that is in his throat that goes to his stomach and they started him out at 1 cc every 6 hours, and today they bumped it up to 2 cc every 3 hours because he's been doing so well with it. He had a bowel movement which is gross I know sorry, but very exciting because it means his little organs are handling the feedings really well!!

I'm ashamed to admit it but I haven't been holding up as well as I think I should. It kills me to not be able to hold him and it scares me to think that he doesn't know I'm his Mommy. He's started to try to cry, and you can tell by the look on his face that he would be crying if not for the tubes in his throat. That, I think is the hardest thing, because as a Mommy you just want to hold your baby and comfort them when they cry, and not being able to kills me. Touching him lately has made his oxygen saturation drop just because his nervous system is so premature that it's literally the same as someone coming out of nowhere and grabbing you. It's hard to just sit there and look at him, it kills me and I know I have to be strong for him but honestly sometimes I just want to break down and cry, and I do. My OB wasn't surprised when I was telling him all of this, I guess it's something that happens with a lot of mom's who's little ones are in the NICU...it's something I'm dealing with and I know it'll get better and worse...and I'm hoping that by posting it maybe I'll be able to help someone else out there. And sometimes it's just nice to get it all out of your system. I'm trying my hardest to be strong but I don't want everyone to think I'm not struggling...I am, I'm human and this happens. I want to say again to everyone who is following along with everything that we're going through thank you. Your support is what helps keep me going...it's wonderful to have friends as supportive and caring as all of you...I will never be able to show all of my gratitude. You are wonderful and I thank you all so much. I'll try to stay on top of updating everyone.

Little Guy...

On Thursday they moved Tucker from John Muir to Children's Hospital Oakland to surgically put a pick line in. He got there around 3pm and around 5pm they started the procedure...everything seemed to go well and the surgeon was pretty confident that the line was where she wanted it and working well. They did an x-ray to double check and to her amazement the line went into his artery instead of his vein, which she told us she had NEVER seen happen...which is something you never want to hear coming from the surgeon! She decided to pull the line (it was in his leg) and that they would try again on Friday. She had done the line at his bedside because normally it's a very easy procedure and generally goes smoothly and there are hardly ever any problems. So yesterday, they scheduled the surgery and actually took him to the operating room to perform it, the surgeon had said it would be better in the operating room because she could get real time x-rays to check the placement of the tube as she was doing the procedure, to make sure it was going EXACTLY where she wanted it. Of course I was a nervous wreck because by moving him to the operating room they would have to put him on a regular ventilator, the high frequency ventilator can't be moved with him and they don't have one in the operating room. The regular ventilator is just a little harder on his lungs and can cause problems of its own which is why I was soo worried. Luckily he did amazing and just flew through the surgery, the line was placed perfectly and the surgeon couldn't have been happier. When he came out of surgery his nurse Andrea, who was amazing I absolutely loved her, said I should change his diaper for the first time!! How scary!!! He's sooo tiny I was so afraid to do it...but I did and I felt so much more like a Mommy!! I have to say I was not the first to change his diaper...on Thursday while I was away from his bed Danny did his first duty as Daddy and changed his diaper!! I was so proud of him...Andrea said he wasn't even shaky or nervous at all...completely confident and no problems at all!!! Most Dad's are nervous with term babies so the fact that he was so confident just reminds me of why he's so wonderful...honestly I've never seen a man so dedicated to his son...he's amazing...between Danny and my Dad I see why Tucker is such a strong little boy!! After the surgery today though Tucker gave us a little scare...when they moved him to the conventional ventilator it allowed his lungs to collapse down a little bit since there wasn't as much pressure as there is with the high frequency ventilator. So when that happened they had to bump the oxygen level up to 100% which he's never been on, and still his saturation was not good and his carbon dioxide was really really high. Eventually though they gave him some Morphine (which took away the horrible pain I'm sure he was feeling from his surgery) and increased the pressure on his ventilator and he started coming out of it. His saturation went up, carbon dioxide went down and so did his heart rate which was really high. When I left at about 7:30 he was doing much better and I felt a LOT better!! I just talked to the nurse and she said that he's doing really well...that he had had a really traumatic day but he was a tough little boy and he's continuing to look better. Which I know he is, but it's hard when I can't be with him all the time. Luckily I have a wonderful husband and family who stay with me at the hospital for as long as I want...my Daddy is awesome, he came and touched Tucker for the first time which I think was a great feeling for him. My Mom has been great, she was so supportive this whole weekend and has been taking care of me and forcing me to slow down a little bit. I know I've been pushing myself a little too hard but I can't help it because there is nothing that will keep me from seeing that baby!!!

I have a favor to ask anyone out there who is willing...Tucker's blood type is O-, and Danny is A- and I'm A+ (he just happened to get the recessive blood type that we both carry) so obviously we can't donate to him. He's going to need a lot of transfusions and it's not that I don't trust the blood bank but I would much rather KNOW who his blood is coming from. Is there anyone out there who is O- who would be willing to donate for the little guy? If you are let me know please, and I'll tell you what you need to do. I'll pay the fee that they charge, it's the least I can do. I wouldn't normally ask this but like I said, I would really like to know who the blood is coming from that they're putting into my baby. I would also like to encourage everyone to go donate blood if you're able...being at Children's I've seen how many little ones need blood transfusions, and it's heart breaking it really is. Please think of them the next time there's a blood drive in your area and take the time (if you can) to donate. You never know who's life your saving!!! Thank you everyone who's been following along with our story and sharing in this with us...I know I say this a lot but we are soo blessed to have you all as friends!!! They're hoping by Monday Tucker will be stable enough for transfer back to John Muir, so say a prayer that he'll be strong enough to make the trip back!!! We're so proud of our son...he's such an amazing little boy, he's defied every odd and proved all of the doctors wrong!! We could not be happier! Thank you again for all your love and support...I have more pictures coming soon!!!

I have a favor for everyone...

I've asked a lot of everyone for us...but I have a favor to ask of everyone on behalf of two of my best friends. My best friends Susie and Annette have had major traumatic events happen this past week on top of everything that they've been so devoted to going through with us. The night before Tucker was born, Susie's brother in law Donny, her husband Kenny's brother passed away...I want to ask you to pray for Donny and for Susie and Kenny and Kenny's parents. They have been so wonderful and supportive of us and I couldn't ask for better friends ever, she's like my sister and I love her dearly. She has stood by me through thick and thin and all I can ask is you keep her and her family in your prayers for strength and comfort through this difficult time. I know God is with her, and she knows that as well but I would really appreciate it if everyone would take some time to think of her. Annette who I love just as much as Susie and I consider to be my sister as well also had a major event...her really really close friend Anthony was skate boarding in Santa Monica last weekend and fell and hit the front of his head very hard and sustained a really bad head injury. He was taken to UCLA Medical Center and he's been there in the ICU ever since. He is a wonderful person and so is his father, and I would really appreciate it if you would include Anthony, his father Sam and Annette in your prayers. He is in critical condition and it's been very touch and go since the accident, and I've been praying that God will give him the strength to pull through this. It's going to be a long road for all three of them, and I ask you to please remember them in your prayers...you have all been so wonderful for us, and they are like family to me...I appreciate any thoughts or prayers you can send their way!! We love both Susie and Annette, like I said they are wonderful, wonderful friends, their devotion to our family and the love they've showed me through the years is amazing...I couldn't ask for better friends...they are always there when I need someone to lean on. Please help them with your prayers...it would mean a lot from our family to theirs. Thank you guys so much...we're so grateful everyone has been so wonderful with their thoughts, prayers and support we appreciate it more than we can say or you'll ever know! We love you all...thank you again, With your support we will all make it through these difficult times!!

All our love,
Audra, Danny and Tucker

Tucker Update!!

I first want to say how much everyone's support has meant to all of us, not just Danny and I but to my family as well. You guys have been wonderful and we will never forget the kindness and compassion you've shown our family, we are very blessed not only to have Tucker but to have such wonderful friends and family such as you!! As of tonight Tucker is doing really well...he's surprised all of the doctors and nurses not just in the NICU but also in labor and delivery! They are having a hard time getting a perk line, because his veins are just so small...but they do have a good site for an IV. The perk like is the best because they can keep it in him for a month or more where as IVs they have to change every few days and try to find veins all the time that will work. With the perk line also they can draw blood from it so they don't have to keep sticking him, which I like just cuz I hate to think of them having to do it all the time! He's been able to keep his heart rate and blood pressure stable without the aide of drugs...which is amazing!!! This could change and go up and down at any time, but the fact he's been able to do it for this long is just great. When they delivered him it only took them like three or four minutes to get him breathing and his heart rate going which is amazing also it usually takes a LOT longer! He's on a high frequency ventilator which pumps the air in a lot faster...it looks like it's kinda shaking him, and they've actually lowered the oxygen saturation down to 23% and that's wonderful, they think they'll have him on the regular ventilator by tomorrow (big maybe) or Tuesday. When he gets on the regular ventilator and he is stable (heart rate, blood pressure, temperature) we'll be able to hold him!! Which we're so excited about!

This little boy is a true gift from God, he is our miracle and we couldn't be more proud of how well he's doing. This little boy has shown me what true strength is, and I am so blessed I am his Mommy!!! Danny and I are completely addicted to him and we just can't get enough!! Thank you again everyone for caring so much about our little family...it means more than you will ever know and I have no idea how to thank you all and show you how much you mean to us. Tucker is such a lucky little boy to have so many people who want to know how he's doing and care about him as much as everyone does. Thank you again we are the luckiest family!! Thank you so much everyone...we're praying Tucker will stay strong and keep fighting as hard as he has been...he's amazed everyone including us and we just hope he'll keep proving them all wrong!!!

Our love,
Audra, Danny and Tucker