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!!