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."