Long few months...

So I realized I haven't written an update in far too long, and a lot has been going on in the last few months. Since April Tucker has been in and out of the hospital so many times I've lost track...he started the ketogenic diet to help stop the seizures, and after a month it wasn't helping so we've stopped it. He had his MRI on May 1st and the results were anything but happy. We have found out that Tucker has substantial brain damage to the right side of his brain, and a sizable amount to his left side (not as much as the right). It confirmed the diagnosis of hydrocephalus (where the ventricles of the brain fill up with cerebrospinal fluid) and microcephaly (which is where the brain doesn't tell the skull to grow). They had told us before we left the NICU they thought he had it, but they didn't know how severely or what was causing it. His right ventricle is severely enlarged, it's filling up to take up the space of the missing brain matter...same on the left, only not as severe. The damage to the back of his right occiptial lobe is so severe that it has actually turned to mush or liquid, and they're concerned about his vision. Tucker's neurologist is really concerned about his cognitive and motor skills, and how those will be affected, and from the way he talks it doesn't seem that he's very confident Tucker will be able to do much. We still have hope though...we have in-home PT set up to start soon, an early interventionist (who is wonderful) and early start for blind babies, who have been awesome in helping get us things to stimulate his vision. He's proved all the doctors wrong so far just by being here...there's no reason to think he won't continue to prove them wrong.

Last Sunday I took Tucker to Children's ER because he was throwing up his G tube feedings, and pedialyte. They admitted us and did a battery of labwork, which showed that he had inflammation somewhere in his body, but they didn't know where. They watched him and continued bloodwork throughout the next few days. One morning they came in to draw his blood and the stress of it sent him into a seizure fit, he had 20 seizures in 10 minutes, they called the resident immediately and started Ativan to try to calm him and stop the seizures...he had a total of 60 in an hour. They didn't stop until after a second dose of Ativan and a loading dose of his seizure med Depocote, which made him a zombie for the rest of the day. The next two days was more of the same, he would start screaming, which would stress him out and send him into a seizure fit. They were so concerned they sent him down for a CAT scan at 4 am and set up a lumbar puncture for the next morning. They were convinced that either his hydrocephalus had gotten worse and was putting pressure on other parts of his brain (which would lead to him needing a shunt placed) or he had meningitis. Luckily, everything came back normal, which left them with the questions of why he was acting this way. Tucker is not a fussy baby, he rarely cries...he's usually smiling and laughing, so to see him screaming as much as he has been has been unbareable. He seems to be getting better, and they think now that he may have had a horrible stomach bug that really hit him harder than most kids. They are however, still very concerned with how many seizures he's still having, so they did a 24 hour video EEG, to see if there is new activity or if the seizures have increased in frequency. They've added a second seizure med and upped the doses on both of them twice to see if it helps. Danny is at the hospital now with him, Tucker and I had a rough night last night and I needed some sleep. He seemed much happier today and not nearly as fussy as he has been.

This baby amazes me...he can go through so much and still have smiles and giggles to share with everyone. All the nurses love him...his big blue eyes and beautiful hair and smile (and believe me he turns on the charm when they're around). There is some good news, tomorrow morning they are going to do an echocardiogram to check to see if his pulmonary hypertension has stayed away, and if it has, they are going to see how he does being off oxygen while he's awake! He's been on 1/2 liter for two days and has been fabulous! I'm keeping my fingers crossed...I would love for him to be oxygen free if he can...I think he'd enjoy the world a lot more...especially swimming! (He's a little fish!) I have more pictures to post...no one will believe how fast this baby grows! (His hair too...we just got it cut and it's already long again!) Anyway, I wanted to update everyone, I had said I would let everyone know the results of his MRI and then I never did, I'm sorry it has taken so long, but it was the hardest thing to hear and I'm still trying to deal with what they've told us. For everyone who follows along with Tucker's story...thank you, we'd be lost without your support! I'll post the new pictures soon. I think we'll be able to go home tomorrow...but it will all depend on the echo. I'll be sure to let you all know!

Today...

Today was a very difficult day, not just for me, but for the bay area as a whole. Today four brave Oakland police officers were laid to rest...slain in the streets by someone who didn't want to face justice. As I sit here I find it hard to write all of this but it has to be said. These men were amazing men, they went to work everyday knowing it could be their last, in a city that hates the police, but they loved their job. As I watched clips of the funeral I cried every time...22,000 people came to pay their respects and to say goodbye; 15,000 police officers from around the country and the world. That is amazing to me...as a wife of a police officer, this is my worst nightmare. It's what keeps me awake at night, and makes me hold my son and husband as close as I can. As much as it terrifies me, I am proud that my husband is a police officer...he goes everyday to protect our family and every other family who lives in our area. He is an amazing man, not many are willing to go to such lengths for others...and yet he does. My heart breaks for the families of these officers, for the wives and their babies; but I know that at the same time through all of their heart break, they are PROUD. They have every right to be...their husbands made the ulitmate sacrifice to protect the lives of complete strangers. They have been called heroes, and rightfully so...their names will forever be remembered for their last and greatest sacrifice.

There is one man, a good samaritan who needs to be acknowledged as well. For those who haven't heard, when he heard the shots, ran towards them not away. He reached one of the two downed officers and without reservation, took off his coat and applied it to his head and began doing CPR. How selfless he is to go into such a situation without hesitating to try to save their lives. He didn't know where the shots were coming from, and yet he still ran to their aide. The Oakland police recognized him as a hero as well...and I agree wholeheartedly, and hope that more people commend him for his bravery.

Please, keep these officers and their families in your thoughts and prayers; and say a prayer for all the men and women who put on their uniforms and go out to protect us each and everyday.

Wonderful Day Today...

First, let me say that I feel so blessed and loved to have so many people praying and crying along with us. I was crying as I read everyone's responses to my last note...I don't know where we'd be without our friends and family. We love all of you! I know you're probably thinking I'm nuts after the news we got yesterday, BUT I took Tucker to the pulmonologist (lung doctor) and we had a great appointment! I let him know everything that had happened yesterday, and he of course is concerned as well and wants the MRI done as soon as possible also. He told me that he had planned on weaning Tucker's oxygen today, but with everything going on with neurology he thought it best to hold off, and I was pretty disappointed but understood why he would want to wait. Then I told him about a little accident we had (I can't believe I'm about to admit this because I feel like the WORST mommy ever!), about a week ago Tucker's oxygen was disconnected for about 2 hours...and he did very well with it. We had his pulse ox monitor on for the last 30-45 mins and he was sating between 97-91, but never dropped lower than that. Once Dr Fong heard that story he decided he couldn't ignore how well he's doing and decided to wean Tucker to 1/2 liter!! He said that if he was sating well by the end of the appointment we could keep him on it and watch how he does! He also said that if he needed more at night then to turn up his liter flow to a full liter. He then told me the best news ever: in a month or so, if he can stay stable on 1/2 liter he's going to try him on room oxygen while he's awake and put him back on oxygen while he naps or sleeps at night!! A month or so from that we'll do a sleep study to see if he can sleep without having any problems through the night without oxygen!!! I wanted to cry...it's the news I've been waiting to hear! He was so happy with how he's doing...and it made my heart soar! So far, he's doing great on half a liter...he's sleeping now sating 100%. He is AMAZING!

I thought he would be really groggy today because of the phenobarb, but when I woke him up for his appointment, he was happy and talking. He didn't cry in his car seat or on the way to the appointment in the car, he was happy and talking the whole way there and the whole time at the doctor's office. He came home and took a nap, we went for a walk with Riley while he slept and woke up and ate like he hadn't eaten in years! My mom was changing him and he actually rolled from his back to his side! He laid on the floor and LAUGHED! His first actual laugh!! He played on the floor for about an hour, talking and cooing and moving like you wouldn't believe! I don't know if it's the phenobarb or just a really good day but he's such a different baby! He was always happy but I don't know, he has this new alertness and awareness, I don't know how to describe it, he's just amazing me every minute of every day.

Last night was such a hard night for me, and then God amazed me and gave me such a wonderful day today. He has shown me who my true friends are, who really cares about us and loves us, and I want to thank each and every one of you for being there for us. I never dreamed I'd have so many wonderful people to support myself and my family through such a trying time, and there will never be enough words to thank you all. God bless!

Rough Day...

Today we took Tucker to see the neurologist, he had an EEG at 1 and then a consult with the doctor after. Poor baby, we had to keep him up late last night and then wake him up early, AND not let him take a nap. Luckily he was great about it...till right before the EEG, he wasn't so happy then lol. I thought ahead and brought a bottle knowing that would put him to sleep, HALLELUJA! It worked!! He slept through pretty much the whole thing, and was so exhausted he didn't want to wake up afterwards, that was until she started taking the probes off of his little head...didn't fly with him. He was NOT happy in the least. We had to wait about 45 minutes for the neurologist to review the findings of the EEG...which of course drags sooo slowly when you're waiting to hear if your baby is having seizures or if there is something more serious going on. He comes in and sits down and starts asking us questions about Tucker's stay in the NICU (refreshing his memory since it had been a while from the last time he saw him), and just getting as much information as he could. We talked for a little bit about the jerks Tucker has been having, and then came the dreaded moment; "let's talk about the EEG, since that's why we're meeting." And I could tell by the look on his face it wasn't good news...he told us that the results were abnormal, there are spikes and clusters of activity that shouldn't be there. Basically indicating that there is some sort of seizure activity going on, and it's not something that can be ignored. He informed us that there is activity going on while he's sleeping which isn't normal and a lot of other terms I couldn't remember even if I wanted to...all in all, not a very good outcome. The jerks (myocolonic seizures or jerks) are a stepping stone to a more serious condition known as infantile spasms, which causes a lot of damage to the brain if they get to that stage. We came back to the fact that his head isn't growing the way it should, which he thinks could be an indication that at some point his brain was deprived of blood or oxygen for enough time to cause it to atrophy, making it difficult for his brain to grow the way it should. This could explain all his significant delays. With all of his delays, the seizures and abnormal EEG, he thinks he may have a form of CP, but can't say how severe or what it will effect, if it is in fact CP. I think that's where my heart dropped to the floor. The words I had dreaded hearing had just left his mouth, and it crushed me. He agrees the best thing to do next is to get his MRI ordered as soon as possible...and he started him on phenobarbital again. He's pretty convinced that the phenobarb won't stop the seizures, but he wants to try it first since it's the safest thing to do. He said we have to get these stopped before they get worse. If the phenobarb doesn't work we go back and meet with a dietician to try a diet that is supposed to help with the seizures. After that we go to a more powerful drug that has some pretty significant side effects...which scares me more than anything.

We went to visit the NICU after our appointment, and I have to say that everyone there is the most wonderful support group you could ever ask for. They were so excited to see Tucker and how big he was, and you could see the hurt in their eyes when we told them what Dr Birnbaum had said. There's a reason he's alive today, and it's because of how loving and caring they were to him...without them, he wouldn't be home with us today. I can never thank them enough, there are just no words to express how much they mean to us. I made it through all day without crying...until tonight. I had to give Tucker a huge dose of phenobarb (the first dose is always a big one) and I was sitting rocking him listening to our Disney music (I'm lame, I know!) and When You Wish Upon A Star came on (I already said I was lame, bear with me!) and I couldn't help but cry. I wished upon every star in the sky that he would come home, that God would let him stay with us, and here he is. And regardless of whatever label they put on him...he's perfect to me. Until we have the MRI done, we won't know how serious his condition is or what else is going on, there are no certainties yet just more unanswered questions.

I'm sorry I hadn't updated everyone on what was going on, but I guess I figured if I didn't type it and put it out there, it wasn't a serious as I was afraid it was. I don't know if that makes any sense, but I had to be in denial for a little bit about it...I couldn't face it yet. I just wanted to pretend he was just a little bit behind but he would catch up and be fine. He still could be, whatever "fine" or "normal" are. Anyway, I'm sorry this is so long...I wanted to let everyone know what is going on. I'll update more when I know more. I love you all...we wouldn't be here without your support!


"If God brings you to it,
He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment thank God."

How Preemie Moms Are Chosen

Did you ever wonder how the mothers of premature babies are chosen?

Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a preemie."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."

The angel gasps, "Selfishness?! Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air.

God smiles. "A mirror will suffice."

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!!

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.