Five weeks...a look back. Emotions and Pictures.

Can you believe it? Two weeks we've been home. Five since birth. I just can not mentally catch up on the time scale. I was looking through some pictures today...don't think I have shared some of these. I should warn you, some are very heart tugging...I had some tears in reliving the ordeal. But they are emotions I know I should feel and process. So here they are-emotions and pictures. Above all-it is what it is-and what happened was true and I need to allow it to be exactly as it was. It's part of Ollies story. Here's a bittersweet look at our journey. I'm going to do some space filler first, for those who may want to skip the photos, (they are pretty graphic-heart stopping) can move onto another website for now.
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I will never forget the weight of that body on my chest. The color he was, is beyond description. Sitting in the birthing pool. He was just limp. Not even bent legs and arms that you see here. Entire body the color of the head in this picture. No movement. His little arm just rolled down my chest and sunk under the water until I scooped it up and held in next to his body. Watching as CPR was done to this tiny being, right there on my chest. My tiny being. She removed his mask, and wiped blood from his nose. Maybe it was from the birth canal...in my head lingered "maybe not."...Had we not felt his cord pulsing or heard his heart through stethoscope...I would have never guessed him even to be alive. The shock, at 5 minutes post birth as we called 9-1-1.

Right here I stopped. I held my breath for a month. I watched this unfold. I detached...it was not what we had rehearsed or discussed. Kaleem had told me a story in the ICU: It's like we plan a trip to France she said. We learn a little of the language so we can stutter it out. We plan for dining out and etiquette and clothing. We learn of places we want to see and go explore. We buy clothes for the appropriate weather. We pack and we plan. We lay things out, we bring the camera...we get excited for FRANCE! We buy tickets and pay travel agents, we tag our luggage and get on the plane. And we fly a long time, watch an in flight movie, nap and eat, and hold back our excitement to be finally almost to France. And then we land...in ITALY! These photos are the moment we stepped off the plane...we didn't even know if we would have a baby in 24 hours. He could still die. These could have been all the world would ever see of Baby Ollie.

Sometimes babies come out a little blue and need a little help. We had expected that-a variation of normal. Reality was hitting-this was no variation of normal. This was the beginning of Oliver's story...our journey was starting a new chapter.


Wash up for Italy. Note the step stool under the sinks for the siblings to reach. We later learned the sink in the back ran warm water, the one in the front ran the longest, while the second shut off rather quickly. The paper towel holders all had minds of their own. Everything was motion censored, and you always looked a fool waving your hands-sometimes soapy- in front of the detectors for more water or paper towels. The lockers you can get a lock for at the nurses desk. Good place for your stuff since they don't accommodate family-or parents. ... This is where you meet the locals and talk about the land and the other visitors.

We are told he will live. Death is not a threat anymore. No promises, just life. Three hour nap followed by 10 hours of labor and delivery-and another 12 hours in hospital with no sleep. My brother is holding me up. In my arms are the blankets Ollie had laid on briefly during his trip from home to hospital. They smell of him. I can't put them down. In my hand are pics of him the hospital gave me. I've seen him twice. Can't touch. So can not hold. But, I just want to hold him and kiss him and make all this go away. I really really want to be in France. I'm sore, tired and drained. I want my baby in my arms again. But I must push on.

Emily from the child life dept. comes and educates the big brothers on life in ICU. She brings big brother shirts and pics she has cut out in star shapes of baby Ollie...one for each brother. We should celebrate-we did have our baby. Even if it was Italy. We keep it as cheery as we all can while the kids are around. On our faces you can see that inside we are all aching...for more, for less, for what could have been and what will be.

We are big brothers after all!




A day or two later...

So happy the day mama gets to hold Ollie for the first time. He still hasn't opened his eyes. But mama's heart is soaring and so is everyone elses in the waiting room! Ryan is really getting to bond with his daddy. We spent the first three days in hospital 24/7 in a room they let us borrow. Then we began nightly commutes. I spent 12-20 hours a day by his bedside. And this day, I got to hold him!





The eyes open and tube feedings begin. I'll never forget the day they handed him to me and he cracked open his eyes just a slit. He saw me and began to cry. It was as if he said to me "oh my God, mama, it's you...I have been through so much..." and told me how awful it was for him before he was born. I just held him and rocked and rocked and told him how sorry I was that it was so hard, and how much I loved and wanted him, how much we all did. Every day he looked more and more...and I told him more and more. We talked about France and what it would have been like to see France. We talked of Italy and how much it was different than what we had planned. We talked of what we loved and we talked of stuff we didn't like. Mostly, we talked of home-for that's where we would be someday-not in France or Italy.

Daddy and Ryan take turns. Ollie clutches Ryans finger...even with his eyes closed. Ryan falls in love with this little being that he has talked to and hugged and kissed through my belly for months. He's sad he didn't witness the birth but he's happy to be holding Ollie now. He talks of home and snuggling and helping. I can't wait for that day. I feel like we are starting to live in Italy. I sorta long for France-but I really long for home.

My oldest and my youngest. First time. Bittersweet. All the brothers have now met and bonded. It did them good to see him with only a feeding tube. He's just gaining weight and healing bruises we tell them. He'll be home soon we say. Not much longer we promise. We don't tell them the EEG and MRI results we wait for. If he will be "damaged" or not. So much goes unsaid from adult to child. So much is said adult to adult through a mere glance of eyes or change of position. We have learned new languages. Secret languages...and medical languages. We can all talk of testing, tubing, and medications as if we are doctors ourselves.

We kangaroo care alot...skin to skin... I cannot describe-I can't even begin to describe the joy of holding and feeding my baby. Feeling his little hand-not limp...clutch my chest like this.
The feeding tube goes from mouth to nose and often changes position. We watch as the outter face and top of forehead seem to clear of bruising first. The eyes seem to have been impacted the most...as far as discoloration goes.

He just nursed...is that...a...smile.....? I just noticed!
Peeping eyes watch loveys when mama's taking a break...sucking on paci...loving his new crib and graduation to B room. still puffy. Still bruised. But better every day.
Mama's back from break. More cuddles, more milky...more healing. We rock and rock. Rock and Rock...for hours on end...bleeding into days and starting weeks....we've been here too long now.

My brother! Our stay is almost over in ICU...Will and Ryan come on a weekend that Jacob and Bradley are on visitation. We decide to camp out Oliver. I have already stayed overnight in the parking lot in my van. Ollie is exclusively nursing at this point. Nurses call my cell phone in the van and I run up from the parking lot to feed him on demand. No more scheduled feedings...yet they won't pull the tube..."just in case." No where to accommodate a nursing mother. So we do our best.
Ryan in Will's truck. Our family camp for Fri and Sat night. Sun and Mon and Tue I am on my own again and we come home Wed.
To the very spot on the corner of the bed that Ollie was laid after he left my arms in the water. The first "dry land" he experienced. The spot he laid lifeless while EMT's continued CPR and rushed him away to Sutter Roseville. The very spot he laid on the three baby blankets warmed by a heating pad...the ones that smelled of him....that I couldn't wash, or put down. This time in that spot...he cries, he's pink, he's mad at the car seat...and he's home.

Today....Fiveish weeks later....
He still holds a hand up to play with the hair on the back of his head. He's done this from day one, and his hair shows evidence he did it in womb. He does this on both sides. He sighs big. It comforts him. He's laying on the blanket with trains on it from the hospital.
He lays with his big brother....my oldest and youngest....
He watches cartoons with Ryan...holding his finger...just like on the day they met. He plays with his hair. Both in their undies...brothers.

And...I decide that France was a dream, Italy was alright...but something about our living room floor...it's the best place in the world today. The simple things ya know? (and yeah, that's the same pile of unfolded laundry, but who cares? ...lol)

How much to give?

When did it happen? We all grew apart. Was it always this way? When did someone decide that babies should sleep so far away in another room? A monitor replaced a mama's ears. Logic and lecturing replaced the feeling in her heart. When did we decide that's what was best? Should a child have to cry before they are scooped up? Is it really so wrong to sit and stare for hours on end at an amazing miracle? Is there really a doubt that a mother will not take care of herself because she is obsessed with her child? Should she really be told to go lay down, go and eat, go and shower, go to work? Put that baby down and take care of yourself. Is there an hidden study that shows a mother loses her mental capacity upon birthing? Does anyone know of a story or seen a newspaper article of a mother who died because she held her baby too much? Is it really so wrong to actually want to stay home and cuddle your own baby all day? Am I anti-woman rights for opting out of working full time? And what exactly will go wrong? Will that baby be co-dependent? Will he never be able to function on his own? Will he be more adjusted and independent because he has confidence in his family support? Do I have to push him away at 4 weeks old to his own room to foster independence in adulthood?

It seems to me that I don't. It seems to me that what he needs the most in the world right now is consistant responsiveness. My heart tells me that he needs to know that I will answer his cries, or even tend them before he cries. My heart says pushing him away now will make him feel abandoned. My heart tells me he belongs by my side when we sleep. Where I can hear his little grunts and feel his lungs against my body doing what they are supposed to do. Asleep next to me on the couch, where I can glance over and see his chest moving up and down. He's snuggled up into my leg, I can feel his warmth and health and he smiles in his sleep. My heart tells me, at 4 years old, or maybe Kindergarten, he will do like his big brother has done. His long legs will begin to push me away in the bed, and soon he'd rather sleep on the floor in a little sleeping bag, close, but not too close. Soon he will just get up one night all on his own, teddy bear dragging along behind him on the floor, and toddle to his own bed. Soon he will dodge my kisses. Soon, with out any effort of my own, he will become this independent creature we all try to foster in our children. And what will be interesting to me is to see...how we will respond in the face of life. Will he come to me in times of stress? Will I still be the comfort I am now? Will he be able to get what he needs and toddle back into his life adjusted and normal? What exactly is the fear? That at 40 years old he will climb back into my bed? That he will never leave home? That he will not be independent? Jobless? Unable to function in life because I did not start pushing him into it at four weeks old?

They say that an infant lacks the ability to lay down memories. Twenty years ago they said that an infant also lacked the ability to feel pain. They did open heart surgery with no anesthesia on little babies. They still routinely do circumcisions with no pain relief. They answer the questions of concerned parents with "they usually fall asleep at the end." Fall asleep? Wouldn't you after a trauma? Once it was finally over and they unstrapped you from the board and stitched up your boo boo on your woo woo? Your voice horse from screaming in protest for 10-20 minutes with all you have in you? I would fall asleep. Sometimes the heart surgery babies never woke up...what if someday soon they sadly realize that a baby does have memory? They finally realized that babies feel-I wonder what it took to make that a "formal" and recognizable medical realization? What kind of testing and research had to be done? It couldn't be that a mother noticed she accidentally scratched a baby with her diamond ring and he cried in pain?

Is not one of the biggest complaints that childhood is over so fast? I frequently hear "when I was a kid..." Sweet memories of childhood. I want to be one of his memories. His mama. There. Always. Maybe someday they will find away to reach the memories stored in our brains of our infancy. What will yours say? What do mine say? I know what his will say.

I cannot argue that "training" a baby to put himself to sleep doesn't give the parents more free time. Teaching a baby to entertain himself does make him more independent. I'm not sure it's the independence the parents are looking for. I see it as more of a detachment than an independence. What must one tell the heart to be detached like that? Perhaps in the fear they are creating the opposite of what they seek. I look at many kids today-who's parents beyond work full time and just leave them money on the table for the day or week. They drive around in their cars and spend and play. No rules, no guidance, no comfort. No, they don't seem bothered by it. But we all are. The adults complain today about these kids endlessly "They chat on cell phones non-stop and have no regard for the world around them." They don't need to. The world pushed them away to their own space the minute they were born, cutting them free from their mama-the only world they have known, and whisking them away to their own bed in a hospital, farther away than they have ever been from mama, and more alone that ever in their life. They still walk in their own world, regardless of if they share it or not.

And I have to say...when I got pregnant, I knew it would be a demanding job. I knew exactly how demanding. I knew fully what I was getting myself into. My dreams were for my child, not my freedom. My dreams were for this tiny miracle and I spent months preparing for him. I wanted the perfect clothes, the perfect blankets, the perfect clean house. I planned the best birth I knew to give him, not me, but to give him. I picked his carseat. I planned to nurse him. I researched my butt off and prepared and planned as much as I could to give to him the best that I had. That included me. I couldn't wait to give him these gifts and to hold him in my arms. I couldn't wait to answer his every coo. He was not just a final number in our family to make things "round and complete." I could give a crap about numbers and organizing and being done and planning the whole future life of ours. Life has it's own plans, we get to ride along. I just wanted a baby. A real baby. One that has needs and wants and cries. I was prepared to change a whole lot for this baby...my entire life.

And I sit here typing, he begins to stir by my side. I stroke his little head and I just whisper, "mama's right here." He doesn't scream. He doesn't demand. He nuzzles into my leg and drifts back off to sleep. My heart...says this is right. For, soon enough, teddy bear in tow, he too will toddle into his own life, and I will be the one battling the feelings of alone. Watching from a distance this miracle as he walks his own life, hopefully a little better, a little more, a little fuller, because I chose to give him all I had and all I knew was right to give. That makes it worth it for me.

Edumacated mama!

Well, I done it! I filed for graduation today. Should get my diploma in August in the mail. AA in General Education...with a specialty in biological sciences..or something like that. In other words I took all classes that met the gen ed requirements but were focused on biological sciences-nursing/human development/sciencey type stuff. whipeeeee! I'm edumacated!!!

Will gave me a big congrats hug. He said he was sorry we didn't do graduation celebrations or baby arrival celebrations. I am just glad to be home and be normal. Can we celebrate normal? Do they make cake for that? I like cake.

So, this afternoon a loud baby waking knock on the door occurs. I let Bradley answer it. I am sitting at the kitchen table going over bills with Will. It dawns on us after a minute that Brad is still standing at the door...and a mans voice can be heard. Will gets up to investigate. The man is standing there trying to get Bradley to purchase his services...he is offering to spray paint our address on the curb. *insert the most puzzled look ever, here.* Even Will was a little astonished. Not so much at the sales...as we have heard it all...(someone tried to sell us dirt-yeah-dirt) but the fact that the ding a ling was trying to sell to a 10 year old. Of all the things a ten year old wants to spend his cash on...I don't think the house addy on the curb is on the list at all.

Hour later...knock knock knock...baby awake again....I let Brad answer, and I hear a mans voice say "mom or dad home?" I wrestle myself out of my comfy chair, Ollie dozing off in my arms against my chest. I take my time. I'm irritated. I get to the door. This guy is dripping in sweat and standing way to close to me. He shoves a paper in my face and says he's getting donations for the local homeless shelter. We have a local homeless shelter? Hm. None that I know of. But I just stare at him. I can't take his paper. My hands are full. Obviously full. I smile. Sorry-I don't have any donations. I jokingly ask for an application for next month. He doesn't seem to have a sense of humor. mmmkay.

I decide on a genius solution to this daily door pounding issue that has gone on for months...literally, daily, no exaggeration....

Yup...it's written in crayon. Purple crayon. Scotch taped to the door. I'm edumacated after all! And ya know what? All is silent *big grin* I feel smart!

What I did-or didn't-do today.

Let's talk. I've been wondering what is it that I do all day long? Have you? I know my husband has...It seems there is a never ending list in my head of things I have wanted to accomplish since pregnancy. I was too tired then. Now I am not pregnant and somehow the list in my head has grown larger. Perhaps it's not so much in my head as blatantly in my face.

I pat. Pat. Pat. Pat. Pat the butt, pat the back, pat the butt and the back alternating. Pat the butt and back together. Pat fast. Pat slow. Pat solid. Pat soft. Pat. There is no burp to be found in any crevice inside or out on this little boy. I lay him down. Silence. Yack. Yup. All over. Change the clothes, change the bedding. Pick the baby back up. Pat. Pat. Pat. He's hungry. Well, duh, he just yacked his lunch up. Nurse the baby.

(Cute eyes watch me while he eats!)

I will get the burp this time. Pat. Pat. Pat. Sniff. I smell baby yack. It's in his hair. Strip the baby, fill the tub. Float the baby who loves the bath. Scrub the baby with gentle lavender soap. Rinse. Warm dry towel. Drain tub. Put away bath soaps. Dry baby. Lotion. Powder. Butt cream. Qtips. Diaper. Poop. Damn. Wipe and recream. Rediaper. Onesie undershirt. Long jammies cause the air conditioning is set to arctic freeze. Pat. Pat. Pat. Nurse. Poop. Sigh. Wipe. Diaper. Nurse. Pat. Pat. Pat. Sleep slowly sinks in. Hallalujah it may be a break for me so I can eat and stretch and potty myself and...slowly and carefully lay baby down. Stand up to tip toe to bathroom. Yack. Turn around and head back. New bedding, new clothes, new diaper for the heck of it.

Pick baby up to recuddle to sleep...sniff. Smells like yack. Back to square one. Forget it. Use wipe, scrub babys head. Now half of his head is crunchy and smells like wipes, the other half is soft and smells like lavender. Oh well. Cuddle baby to sleep. Lay baby down. Poop. Oh for CHRISTS sake! Change baby. Pat him til he's asleep.

Realize I forgot four year old on couch for quiet time....he fell asleep obviously entertaining himself.

Sneak to kitchen, sneak to potty, sneaky sneak sneak. Get some mommy energy. Haha! I am ready for round 2-or is it round 4? Sniff the sweet sleepy baby. He smells like armpit. I so need a shower. And holy cow it's 3pm. Oh well, Will is likely on the way home and he can hold while I shower. He doesn't understand why I want to start another load of laundry. We are out of wipes. He stares at me. I look innocent and go dump the diaper pail into the washer.

That is what I did today.

I am an alien.

Today I got to see the cry face. You know the one. The eyebrows knit together, the chin puckers and the bottom lip sticks out. The little nose crinkles, the hands shake, the legs stretch out straight to curled toes. The cry emerges to say that my mother came to me as an alien from outer space, bent over my little bassinet and scared the hell out of me.

I couldn't help but giggle. I scared him on accident, but the little face was so cute I had to watch for just a moment before scooping him up and covering him with reassuring kisses that I really wasn't an alien. Just mama.

Pediatricians and Pictures

The first outing...


Well I wasn't impressed, okay I was disappointed in the pediatrician we tried. He came with good references and I am certain he is an excellent physician. He just wasn't for us. A little too argumentative regarding whether I had a healthy pregnancy or not, and whether my labor and delivery went well. In my eyes, it went awesome. It was the healthiest pregnancy I have had, my labor and delivery went awesome. It wasn't until we turned the baby over that we realized there was a problem. In his eyes that meant the whole pregnancy was not healthy. Even if it wasn't...an unhealthy pregnancy is not what made Ollies cord strangle him. Am I crazy? Is this some sort of rocket science? Or is it just that bad a word? The dreaded H word? It makes people instantly drop their brains out their ... well, sorry, but it does! So, he was "difficult."

Afterwards I stopped by my mom's office in the same building. I was amazed at how famous little Ollie is. People kept saying my name and walking up to me whom I had never met. They had read the blog, they had seen his pictures. Little Ollie was so awesome! He was wide awake and looking at everyone, showing his cute babyness all over the building. I wonder if that Doc knew that he had a famous patient?

A neat twist to the visit was on the way out, I passed a mom with twins. It took about five seconds for us to realize we knew eachother and we spun around. She was next to me in the ICU the last couple days. Her twins were just a few days shy of full term so she was stuck there for "observation." She was nursing both of them, and it was such a sweet sight to see. She has other, older kids, a blended family like ours, and through our conversation we learned that we live about five minutes from eachother. I meant to get a contact number or email for her, but in the craziness of the last days we both got lost in the shuffle. But now I have it. I look forward to touching base, even if all we can do is sit on a couch together and chat. We just have too much in common and it was way too "coincidental" that we would meet up afterwards, in the same office, seeing the same doctor on the same day.

So, I went home and called my other kids pediatrician. She isn't accepting new patients, and not our insurance either. I begged her office assistant to bribe her with cookies to take my new baby as a patient. I got a call back today to schedule Ollie's first appt. Hurrah! At least her and I can see somewhat eye to eye. She's known me long enough to know I'm not a kook from the back woods. She may not agree with my every decision, but she respects my right as a parent to make those decisions, and she won't sit there and debate with me over a prenatal history that was perfect and a completely invalid topic of argument. She'll "allow" me to delay some of Ollie vaccines if I chose and will at least smile and nod at the birth story. That's all I ask. You don't have to agree with me. In fact, you can think I'm a back woods kook. But just keep it relevant to the topic at hand, take it with a grain of salt and be willing to accept someone who may have a different opinion than yours. In all, I think she believes that being a Doctor means you did extra school and got a damn good degree...no where does it make you a God, nor a dictator. And for that I respect her very much in return. She also teaches which always gets kudos in my book.



Anyway, bills have piled up, time has flown by. Will is back to work now, thank goodness-and we are sorting out this mess of payments to every company one can name. It's a little scary. But-look at the cuteness we have!!!




Isn't he adorable?!!! How can you not totally love that cuteness? His little belly is filling out. He is two ounces shy of nine pounds. 21 inches of adorable. A little fuzzy head, and soft baby skin. So kissable. I can barely put him down even for pictures! His heels are nearly healed from all the needle pokes, his IV holes scabbed over. His little bruised eyes have lost all purple and are just an angry red this morning. He still gets the hiccups every day, as he did in my tummy and it's cuter every time. I'm so happy to finally get to share more of him...the true him...that little spirit that has come fully into his body.

Haunted

Hospital policies have haunted me more than words can even put forth on paper. Even as I sleep in my own bed with my baby tucked in beside me, I awake ready to bat away nurses hands that are reaching for him. Another test, another set of pointless vitals, a scheduled feeding or changing. I hear voices in my sleep that tell me no. No you can't hold him, no you can't rock him, no you can't drift off to sleep with him in your arms. No you can't feed him yet, we have to do this test. No you can't comfort him. I have nightmare of needles being jabbed into his heels for more blood, more testing, always more, and I stand by powerless. Much of it makes sense as far as protection of the hospital. Much of it does not as far as protection of the patient. He stares at me in my dreams questioning me for standing by and not protecting him from what they are doing. And I can't. Even if I want to, I can't. I am cuffed, tied, strapped, gagged, unable to do a thing but watch, and make my useless presence known to my poor baby.

I am haunted by the words of the infamous Dr. Doomsday-the creator of the NICU where we were. Repeatedly telling me I was a diabetic. I never had diabetes, never tested positive in any pregnancy for diabetes. My baby weighted 8lbs 6oz after he was ventilated and given several IV's and boluses of fluid. He was likely more toward the end of 7 pounds or 8pounds exactly. Not a large weight you would see with a maternally diabetic baby. Yet this is considered huge and a sign of maternal diabetes? All because his blood sugar was 0 at birth. The thing is...all of his systems shut down at birth, his liver, kidneys, brain, heart, lungs, and adrenal glands...which regulate hormones related to blood sugar. Yet, the Doctor did not focus on his liver shutting down and say he had liver disease and make a huge issue out of that-it was all about the sugar. Which, his low sugar was definitely an issue, and did need treatment, I never denied that. But to have this man look at me in the face and call me a diabetic when I could prove otherwise to him...flat out pisses me off. This same man looked at my husband and told him that homebirth was wrong and that all his babies that came in homebirth ended up really really retarded. All 8 of them, every year. All 8 year. There were 62 babies in the NICU when we were there. One was a homebirth. 8 a year....that's less than one a month. How can he say all homebirth is bad when his very ward is full of patients from his own hospital? Treated by his own OBGYNs? Transferred from labor and delivery down the hallway?

I look at the discharge report that I was given a copy of. It's wrong. It has repeated incorrect and some flat made up information. It says my midwives never did CPR. It says I never had prenatal care. It says my reasons for homebirth were to avoid any medical assistance. It makes me cry. I don't understand the downright hatred of homebirth. There are many things that I am not, many things I chose not to be, but I do not condemn and hate the people who chose those paths. I am not for hospital births during a normal pregnancy, I am not for bottle feeding when perfectly good mama milk is available, I am not for the cry it out method of child rearing...and yet, you will not find me talking crap or putting down those that choose these things. I just don't understand. I could see treating me like crap if you could prove that I had an untreated medical condition that caused what happened to my son, but the truth is you can't. For one, I had no medical condition, let alone an untreated one. For two, the lack of blood sugar was a side effect of stress from being strangled in the womb. It was not a separate condition. He used all his sugar trying to stay alive and combat the stress. What the report doesn't say that mom was at bedside a minimum of 12 hours a day, more often 18-20. It doesn't say mom got 4-6 hours of sleep each night at most and was back at bedside. It doesn't say that mom knows each nurse by name that walks in the room and exactly how tender her touch is. It doesn't say that mom does all care allowed singlehandedly-changing diapers, feeding, adjusting monitors, tubes and wires as much as they will let me touch. It doesn't say mom slept in car in parking lot for 5 days with cell phone to be called up to nurse baby on demand. It doesn't say any of that. It underlies the terms neglect, crazy, bad, and wrong. All because I made a choice that they wouldn't have made. A choice backed by education, research and belief. A choice which is legally my right to make.

And yet in a community I once respected greatly and wanted so badly to be a part of, I am now shamed. It hurts. The ignorance hurts even worse. The unnecessary testing and about 7 days worth of extra time spent there for these tests which were related to a condition never proven by any testing...that hurts the most. Not having the power to decline this testing without my son being taken into CPS custody-that hurts. Even under custody, they would have done the testing because of their belief-a belief and nothing more-a belief with no fact and no proof. A belief I think was formed the minute they heard homebirth. Let's discuss powerlessness in it's greatest form.

I sit in my living room, baby cradled in one arm, pecking out this post. My oldest boys are arguing, my Ryan is running the show. My house is a mess. The dishes unwashed, the laundry unfolded. The Chihuahua's are scrounging as if starving. And I am smiling. Because I'm home. The blissfulness of chaos-my chaos. The insanity of four boys-my insanity. My home. Here is the place where I get to say no. Here is the place where I say who touches my baby and what is done to him. Here it is safe.

And yet at night my dreams tell me different. They can come here too. They can be anywhere. They can rob you of your sense of freedom, rob you of your right to parent, even the right to just touch your own child. They can take away any sense of normalcy you ever thought you had, and what's worse they make it your fault that it's gone. There was no accident in the eyes of the medical professionals.

I don't know where to turn from here. I don't know how to feel safe again. I don't know how to trust again. I have a routine pediatrician appointment on Monday and it makes me sick to think about having to go to it. I will, of course I will. But it doesn't take away the knot in my stomach of someone else in a white jacket and scrubs touching my baby. I want to hide him from it all. I want the 21 days of medical hell to be offset by 21 days of home. But, I have to force his anti-siezure medication down him, for siezures he never had. I have to take him to so many follow ups...I have to. I am finally in my own home, my own bed, my baby free of wires and tubes, dressed in his own clothes, and still my sleep is fitfull.

As I watch his little black eyes diminish day by day, I wonder how long these wounds will take to heal.

From Ollie

Dear World,


Sometimes life gives you very hard things to conquer. For me, obtaining life itself was a tough obstacle. The day I was born into my dada's hands and turned over to look at, I was very very blue and very sick. But, God already had many human angels in place. It started with my midwife who said that I would not be the one she lost..."oh no she said, not you" I wasn't lost. I was just hidden behind a bad boo boo. I went to the hospital where day after day they did many things that helped me get better, even though it made my mama very sad to watch. Some of the nurses made mama cry, and some made mama happy. I was a sick boy.





But today was different. One of my angels Miss Carrie was my nurse again. She helped mama feed me for the first time, in spite of all my tubes and wires. She told me I was strong, and she told mama she was strong too. We were strong together. Today Miss Carrie did something special. She took me from my tubes and wires, she set me free. She took out my IV and unhooked all my beeping monitors. She cleaned out my crib, the only place I'd ever seen, where I spent many hours staring at my pink chicken, dragon, cow and bear. I wondered why my mama had to leave me so much, and who all these people where while I layed in that crib. But I kept getting better every day. Here's the last of my stuff hanging in my crib.








My brother Ryan picked me out some clothes to wear today. I was always wrapped in hospital blankets before. Now I wore a Pooh bear gown and little hat. My nurse took pictures with my mama and brother.








After a while, I was put in a carseat and we got on the road. The same road that I went alone with Miss Carrie away from my mama to the hospital. Now I rode in that carseat back the other way again, with my family, away from Miss Carrie. I was tired and slept the whole trip. We came home. We came to the very spot on the bed where I layed, fighting for my air, trying to stay alive, wanting so bad to live this life God gave me. The very spot that the 8 men in blue-the paramedics-scooped me up and took me away. Mama cried and cried to be back in the very spot we started at. Only this time, I was not blue, and I was not still and floppy. I was very wiggly.





This is me and mama in front of my house where I was born just before we walked in.






Mama made a warm bath. She took off all my bandaids. She and my brother got in the tub with me. I fell asleep floating in the warm water. It felt so good. Mama picked off all the hospital adhesive and goop, and we all soaked until the water was cold and our skin was wrinkly. Ryan was happy. He did not get to come in the water and see me come out the day I was born. He was sad about that. But he got to come in the water with me the day I came home and restart.


Mama put warm lavender lotion all over my skin. She dried my hair and put me in snuggley jammies and gave me warm milky to drink. I am now in my bed with mama. Her and brother are ready for a long long long nap. But, I really don't feel so tired. You know, I feel pretty darn good! My Doctor says I'm a miracle. Everyone is in a stir about me. But I just wanted you all to know that I felt your prayers when I layed in my crib getting better. I felt all your hearts reaching out to me and it gave me a reason to not just live, but to live my biggest. I know that my life has so much in store and I am so excited to get started! Thanks for praying me home everyone! Here's me now:

PS-There IS no place like home! My name is Oliver George Payton-and this is a new chapter, a new journey in my story.

18 days

It's been 18 days. So close to leaving for home, I fear I will jinx myself if I stop to look around. Even the most faith filled person can get a little"stuporsticious" around here. Crossing my fingers at blood sugar checks. They were 81 tonight. Anything over 45 is good. Higer than 60 is awesome. Next check around 3am. Then again around 9am. Hopefully I will have pinned down Dr. K by the 3pm check time...and gotten discharge orders. I hope I am not jinxing myself by even discussing it. But I also want to take the power out of that superstitious thinking by putting it out there for others to see. Be quiet brain. Let the Man above do his work and the lil one below show his amazingness to the world. Stand aside and let the masters work.

I dare to look around me. The soft hum of the air conditioning makes this room seem even more freezing than it is. It's a small family waiting room, and I believe it is where the stench of this hospital originates from. Earlier today I came in here and there were 4 children, alone, jumping on the couches, sweaty and screaming like it was McDonalds. I was a little irritated as I glared at the "do not leave your children unattended" sign clearly posted on the door, in Spanish and English. No excuses. I slumped down on the stinky armchair anyway. The trash is overflowing with vending machine wrappers-the sustenance of life around here-quarters for food. Thank God for a husband who has faithfully pulled wonders from our kitchen cupboards and forced me to take them with me. Sometimes an ice chest magically has appeared on the seat next to me in the van. He's a good man.

It's funny as I type this, to my left about 10 feet over are a man and a teenager. They are playing a video game hooked up to a small TV. They are laughing and giggling. It's 930 on a Sunday night. They are sitting in a NICU hospital waiting room, having fun. A woman walks in and the noise stops. The smiles fade immediately, the sound of the cheery characters on the TV is silent. Hushed words are whispered in Spanish, tears fall and they rush from the room. I keep clicking at my keys. This world never existed 18 days ago. It was a scary place, avoided at all costs, in a huge building far away. This place was where other people went. Not me. I always said when I went to this place, it would be for work. Not like this.

And now standing on the brink of escape I stop to look back. I have to feel this. While it's raw. Here lies comrades in battle. Here lies many tears. Here in this place prayers rise from the rafters on a minute by minute base. Many are calloused-cold-unaffected. Many are raw, torn and broken. There are unspoken rules followed family to family. It doesn't matter what you look like, how many painkillers you've had, what color your skin is or if you are wet with tears. Here we are equals. Here, above all, you will find hope. It reminds me of scripture that I have heard a thousand times but finally sinks in; Faith, Hope and Love. It is here. And the greatest of all truly is Love. Love not only of these tiny babies, but love for another being of the human race. I don't think I can tell you the name of one parent here other than my long time friend mentioned before. I really can't. Yet I know them. I know where they live, all about their children. I know one lady who just had twins and who's husband decided he didn't want a family after all. I know the stories of so many. The mom in the corner, adopting her child. It is really her niece. The sister who actually gave birth 7 weeks early in jail was addicted to meth. The baby now four months old still suffers. But every day her mama comes and holds her and rocks her and sings to her. I have shared hugs with so many strangers, male and female, crying and rejoicing, coming and going. We all pass it on.

In the midst of my pain days ago I was stopped in my tracks by a laughing couple with two empty car seats, one red, one blue. They were going home with their twins. It had been months. I could only dream what I now can almost taste. I imagine myself tomorrow, being the one carrying the carseat. It will pain some of the parents here-bittersweet to see me go-yet you can't help but be happy that another one escapes this place. This place of life saving, hostage holding. It's so much more than I can explain, the politics of it all. It's a lesson you only learn hands on. It's eye opening effect can only be experienced first person. What begins as a heroic effort lingers on with paranoia and legalities-lawsuit preventions. There is so much here that I want to change, that I know would make such a difference. But I am one person. I continue to consider what exactly God has been showing me. What doors have been opened along with my eyes? What is it He would have me see? What path am I supposed to walk once I leave those heavy double doors? Change often begins as a small ripple. Potential is a very strong asset. I continue to consider.

For now I see the clock. Someone needs me. My heartstrings are being pulled.
I will watch the sugars....I will keep you posted...I continue to believe and hope with all my heart that tomorrow I will be the parent with the car seat. A simple item pondered, scrutinized and purchased by every parent to be, holding so much more meaning now than I ever would have suspected as I searched for the right colors, and matching patterns. Had I known it would hold this significance...it would have been the colors of the American flag for freedom...and lined with gold thread! But, an olive green pooh bear print will be the symbol of freedom for us. I can only imagine what it will be like to put my baby in that seat, go down that elevator and walk out the doors, ducking under the scrutinizing eyes of the lurking trolls. My heart forever changed. My baby ...safe...and mine...going home....back to the start of it all.

So close

It's as if I will step out of this tunnel into the daylight again. I am forever changed, in some ways broken by this whole experience, but broken in a way that allows me new insight, a vast expansion of knowledge of the medical field and it's workings, and an insecurity about how completely overestimated the whole system is. Where does one little soul like me fit into this scene? Can I ever make a difference here? Will I be able to honor my heart in a place like this? All questions I ponder...and thus the silence lately. But that is another post.

Today Oliver has had his nose tube removed, his blood sugar maintains. His IV drip is now void of sugar and is only water to keep the line open. I taste freedom. I fear another set back as if it is the black plague lurking around the corner. Can it be the troll has looked away for just a moment and we may make our escape? Tick tock...time will tell. We nurse, we wait, we watch the clock and we pray that Ollie can maintain. They speak of a 6 hour fasting test before he can come home. I am done with tests. My little boy has exceeded their every wish. I will not subject him to anymore. He has nursed and maintained his sugar levels since Thursday at 430pm. Tommorrow morning I will look at Dr. K, steady in the eye, and I will ask her to discharge my son. I will not waiver. I will not shake. I will not take another delay. I am grateful for all that has been done for him, I know he is a miracle. We have all basked in it. But it's time, for me, my baby, and our family to reunite at home and begin another kind of healing. It's time.

I am set to spend night number 3 in the parking lot of Sutter Memorial. I lay in the back of my van and the huge maple trees blow in the breeze allowing sweet sunshine down on my nest in the back. My alarm is set for two hours so I can go check and nurse my sweet boy. I stink. I ran home for a fast shower. I forgot to brush my teeth. I feel like one of those hippies that lives in a tree and refuses to shave or shower until Tibet is free. I don't care anymore about how the house looks or if everything is in it's perfect place. I just want to take my baby home now. So I nod off in my tree-hoping and praying that Tibet will be free soon! Let's pray this baby home...we are so close...it is so time. I hope my next post is full of sweet victory and the opening of a new chapter in this story of our lives. It's time for a new beginning...

Baby steps

This morning I arrived at 10am after 5 hours sleep, and nothing had changed. The pic line was still sitting at 3. 18 hours after our set back we were still just stagnant. I asked the charge nurse for an immediate visit with Dr. K. Within 20 minutes she met me at Ollies bedside. I told her that I was very frustrated. Ollie is not a preemie, he doesn't need the strict regimen of 80ml of food every three hours for exactly half an hour. I told her he was nursing and I wanted to nurse him exclusively and on demand. You can't make a baby fit into a routine like that. If they could make him poop on demand they would...wait, they were doing that to another kid with suppositories...well that's another rant.

So Dr. K agreed to nursing on demand! Big HUGE accomplishment in an ICU. She asked where I would stay and how I would feed him at night, and I should give him at least a bottle so the nurses could...-I cut her off- I said that I have plans and support to take care of me, and that I was not her patient, that I'd rather focus on Ollies care. She just kinda gave me a blank look. So I asked what the plan of action was. She told me that since his hormone Cortisone was low that meant his adrenal gland was not producing enough to keep his sugar stable throughout the day. She doubted he'd do it on just breastmilk as he had the drop in sugar while he was on the rice cereal fortified breastmilk. SO...she ordered a STAT ultrasound of his adrenal gland. Officially-I know nothing, but unofficially I have seen the report and the radiologist hand wrote "kidneys and adrenals normal" so, structurally they are normal, imagine that. But there could in fact be functionally not normal.

Okay, I can deal with that. If they are not functioning normal then he will in fact have another drop in sugar levels and we will have to get him on some kind of hormone supplement. In the mean time she has cut back his constant monitoring of BP, sugars (heel pricks), temperature, etc etc to only twice per 12 hour shift! And--the two sugars that have been checked today have been high enough to wean down his pic line to 2. I hope and pray that by morning it is at 1 so we will have a full weekend of good sugar checks. If that is the case, I personally can see no reason why we can't go home monday or tuesday. If there is another set back then on monday / tuesday we will be getting him adjusted to a cortisol hormone that we can wean down in a couple weeks under a pediatricians supervision from home, not via IV here in the hospital.

So, it's Friday night. As I type my mom is rocking Ollie in her arms, holding him for the first time. In a little while after he feeds again I will sneak down to a warm bed that my hubby has made in the back of the vehicle right next to the parking attendant booth. I will snuggle up, cell phone in hand and take a nap. His nurse will call me when he wakes and I will go feed my boy. Over the weekend Will takes care of Ryan, the older boys are on visitation. Come Monday, all three kids will be home and we are unsure of a plan yet. Will is bringing me food in the morning for the day. I will have to run home tomorrow and shower, lest I get funky. But Will can sit with the baby while I do so. Will have to do the same on Sunday.

It's amazing to me how unfriendly the hospital is to a breastfeeding mother. Of all places where it should be encouraged and accommodated...apparently it's not totally unheard of. Speech finally made an appearance today, because they had heard through the grapevine that the baby was feeding. Good thing I didn't wait for them to confirm he wasn't choking...(thank you dear sweet Miss Kaleem for the firm encouragement to just feed my baby) Speech was just shocked. They also asked about where I would stay and what I would do. I told them about sleeping in the parking lot. She said a couple moms had done that before. One got a motel room up the street. Another parked an RV in the parking lot. I guess there's hook ups for that in one corner of the parking lot just for that reason. Funny how we just now get told these things...

So, once again we are on track. We have a plan. We continue to pray that Ollie can manage his sugars. So far, he has woken himself up to feed on demand all day. Sometimes he goes thirty minutes and just snacks. A couple times he has chowed down and then waited 2-3 hours to feed again. No matter how long, his sugar has been higher or as high as when he was on fortified cereal. Hopefully as the sugar IV gets weaned down he will be able continue to maintain his high sugar levels. We are so so ready to go home. Ollie is 16 days old today. I can't believe it's been 16 days in this hospital. It feels like an eternity. I can't wait to spend 16 days at home. Blissful home...I can taste it...

Ollie got a blanket today, donated from the "family life department"...a beautiful hand made quilt. It's quite large...and covered in trains. No one knows about my trains-except all of you. They don't know I pass the trains when I drive home and say silent wishes and prayers for the trains to carry to my baby who lives way down town. They don't know I lay in bed at night, without my little boy and hear the trains rumble by out the window, carrying his little baby dreams to my ears. Of the huge pile of donated handmade blankets for all the sick babies in ICU, they would grab one covered in trains for my baby.

We rumble on...only tonight, we are together...him and me...and no one to tell us "no"....
I ask you say a special prayer tonight for two nurses who have just blessed and supported our whole breastfeeding revolution, bending the rules for his sake. One is also the nurse who was by his side the hour after birth and transferred him from one hospital to another, her name is Carrie. She took pictures and kissed my head the day that Ollie first latched on. The other has been his nurse the last two nights and has requested him as her assignment every night she works til he goes home. She sat with me til 2 am talking about my fears and worries, letting me nurse him, and openly discussing his birth story with no prejudice, just curiosity and validation. She hugged me when I left for bed...her name is Christy. I hope God will just bless them both and fill their hearts. Without a good nurse by your side, somethings are near impossible. I know I will sleep tonight...my baby is in great hands while I rest, hands that are not afraid to wake me up and let ME come feed my baby. Hands that are loving and gentle. Thank you Lord for good nurses.

Set back

Well. We had the heel pricks down to six hours apart. We had the picc IV line down to 1. We were 12 hours from having it removed. Ollies sugars went from a consistent 80-90 range...to 40. She retested, and it was 41. I cried. Ollie just slept through it all because his sugars were so low. Less than 42 apparently meant a whole regimen of activity to be done. So-he had to have a blood draw, just like an adult would. The nurse let me stay by him and whisper in his ear while she drew his blood as sweet and loving as possible. He sucked on his paci real hard and fussed just a tad but was very compliant. The vile of blood went down to the lab for some STAT testing on what his glucose and insulin levels were etc etc. He had to have a vile full of sugar put into his pic line asap. His IV got turned up, back to 3. After that I got to nurse him again, and he was awake and ready. He took half of his feeding from me which was awesome! He's getting very good at nursing, every time he makes a huge leap. He only had 40 ounces by tube instead of 80. He stayed awake and alert too. Which means he will be able to do full feeds from me soon. It's just getting his sugar figured out.

Luckily Dr. Korte is back tomorrow. She will be running a new gamut of tests on the boy to see what's up with his sugar levels not being stable. My brain is fried and I have no experience in this department. I don't know if it could be diabetes type 1 or 2 or hypo/hyperglycemia. Maybe lacking a hormone. No idea. Unfortunately, tomorrow is Friday. I fully expect to have the hospital basically shut down for the weekend. No speech, no therapy, probably no results. Just an on-call Doc, and a weekend holding pattern. By Monday I'll probably be ready to explode again. I just hope and pray we get some sort of answer.

There is a little girl in C room. She is 3 months old. She cannot hold down food. She hasn't since birth. She had to have intestinal surgery which resulted in bad inner scarring and "sutures" (parts stuck together from surgery that wouldn't normally be stuck together) They took her out today and laid her on a stack of blankets on the floor with some toys that were ordered and brought in for her to play with. In two weeks she is too old for the Neonatal ICU and will go to "Peds" ...pediatric ICU. She's never been outside. She's never felt the wind on her face. She's never seen anything but that room, those tile floors the slats on her crib, and different faces every hour of the day. It made me really sad for her. I want to scoop her up and run out side and let her see the tree leaves moving and feel the sunlight on her skin. To gasp when the breeze hits her face. I pray to God for that sweet little girl. I beg to God to set Ollie free. We have to see the sunshine, we have to feel the breeze, we have to live a life outside of this hospital room. I just believe in my heart there is so much more in store for this little boy...please pray for answers. Please pray for freedom.

Slumpy

11:20p.m. I'm sitting in a hallway. It's quiet. Too quiet for a hospital. Lights are dimmed. Floors are polished shiny and new. The large rectangle fluorescent lights reflect back down the long corridors. I'm alone. To my right is the labor and delivery ward. I hear nurses quietly clicking away at computers. Every here and there I can hear a baby fuss. What a beautiful world. If they only knew what was merely feet away. One hallway over and a matter of yards is the troll lurking under the bridge. If that baby doesn't breathe just so, or nurse well, weighs too little, or doesn't respond according to the charts and graphs, they too will find the lurking troll. I ran so hard and so far from this hospital scene while I was pregnant. And here I am. Like everything else in my life I am being taught to balance two separate worlds.

Things are slow. And this part is frustrating. It's like we started all over when we moved to room C. In room C, when the doctor writes orders to feed the baby every three hours, that could mean two or four. Sometimes the baby has to cry and cry in hunger. It pisses his mama off. The nurse the first night was hell. She handled him roughly. It's little things...when you have to poke his heel with a needle to get a drop of blood to test his sugar for example, most nurses do it quickly; alcohol wipe, poke, gather drop of blood, gauze pad over heel with pressure, then bandaid. This lady wiped and scrubbed at his heel with the alcohol pad, pushed the needle way to hard into his skin and held it too long, then squeezed and squeezed to get way more blood than needed...etc etc. By the time she was done I was crying because I couldn't hit her, and Ollie was screaming. By now his feeding was running 30 minutes behind, and he's rooting into my shirt for food, yet I am still told by speech that he can't eat because he doesn't have stamina. I hold myself back from telling them all to go places they have never heard of. Finally she hooks up a vile of my milk to his nose tube...and he continues to cry. After 15-20 minutes of fussing I decide hes probably poopy and put him in his crib to change him-the mattress is soaked. I look around, the feeding tube is laying in his bed. 2 ounces of breastmilk have now fed his mattress. I hate room C. I hate this nurse. Other babies are screaming and another nurse tells one she'll just have to cry it out. How sad.

Im so sick of this. It feels like jail. I can't figure out what me or Ollie did wrong to deserve this. I just want to go home. People point out how healthy he is, or that the mom's of preemies will be here for months. People say I should be more grateful or get more sleep. People say he's never going to remember this anyway and I should leave his side. I'm sick of people. Don't tell me he doesn't remember, when he hears an alcohol pad being opened and pulls his feet up to his belly under his blankets. He knows the needle is next. Don't tell me I should be more grateful or get more sleep, when my baby is being treated that way...Don't tell me to leave his side. It should never have been this way. I will not leave him, and I probably won't get any sleep til we are home. And that is my choice.

Today I tried to feed him. It was awful. I can only feed him every other feeding because the speech lady only sees him once a day, usually when he's exhausted and not hungry because he just finished food two hours before. they don't let him wait long enough to get hungry. He was frustrated. Wires kept tangling us both up. He was screaming into my chest. We only had twenty minutes to get a full feed in, per the speech peoples orders-so he doesn't get tired. Nurses were staring at me. The clock was ticking. The lights were blaring. I finally ripped the monitor out of the plug and threw it. I started crying. I can't try again til 430pm. This is so messed up. Babies don't measure how much they eat and time it exactly every three hours to start. By the time he's done it's only a two hour break before they expect him to get hungry again. I don't even eat that much for crying out loud. His nurse mentioned today that he may have to go home with a feeding tube. Im not happy. This isn't fun. It's getting ridiculous.

His nurse finally talked to the doctor on call and had them order his heel pricks down to every other feed...so once every 6 hours instead of 3. His sugars have been wonderful. They are putting rice cereal in his feeds and it helps him keep his sugar up. He's off the steroids, his PICC line (IV) has been down to 1 for 36 hours now. It will get pulled tomorrow. I have to find out a plan with the doc. I can't expect him to wake up two hours after he just had nearly 3 oz of food with cereal in it, and be hungry enough to eat. There has to be a happy medium here. When I talked to the doc yesterday, she said to expect nearly 2 more weeks of this. I feel like I am dying. I can't stand this anymore. I want to stand up and walk out with him. I want to stab nurses with needles so they can see how it feels. I want to yell at everyone I see. I don't want to calm down anymore. This is the part where I feel pushed to far, and I drop atomic bombs burning bridges and walk away in flames with both middle fingers raised. Yeah, my fingers are twitchin alright.

My poor nurse today is a saint. I yell and throw monitors and she just takes them apart and gives me space. She sees me crying and comes and hugs me and I sob all over her. She tells me to forget what stupid speech says and feed my baby. The next feeding time comes and he's asleep and takes it by tube. It feels never ending. I know it's the darkest part before the dawn. I know he's about to turn. His doc is in tomorrow and we will make big strides. Or at least have a plan. But today, I feel frustrated and weepy and angry. I'm tired of staring at the polished floors and hearing the new baby song.

I want to go home with my baby...and climb into my bed. I want to shut the door on the world and hold him for hours, with no monitors, no nurses saying "its time", no tubes and wires, just me and him breathing together, nuzzled into bed...sleeping if we want to, eating when we want to, visiting all of his big brothers at once instead of one at a time. Yeah, I want to go home.

Test Results!

When I walked into this hospital 12 days ago, I was assured that it was not the Matrix. There were no miracle workers here. I was told no one could dodge the bullets that were shot at my son. He could not bend like Neo and hold out his hand and stop the inevitable from changing forever what he could have been. Prepare myself for death, prepare myself for a lifetime from now of handicaps....

I stood today with weak knees in front of Dr. Doomsday himself. He looked at his papers, he scratched his head. An EEG, a heart scan, and an MRI. There is one area, one centimeter in length, on the right side of my sons brain that shows it did in fact bleed from intense pressure and swelling. That's all it shows. A tiny trace of evidence that this has not all been one big nightmare but real life itself. If any damage was done, and IF it was not corrected already, we will not know what it is until he grows and we encounter problems along the way...IF...other than that, "we could find nothing else" there was no sign a seizure ever even occurred. He didn't dare say "normal"...but that's what was said.

The physical therapist came by today -this morning, before test results- and decided that he did not need her anymore. His muscles are relaxed, he moves like a normal baby does. She has nothing to "therapy." She said she does not know why or how, and she doesn't ask those questions. I told her I knew. She smiled into my eyes. She knew too.

Today he nursed for the first time. He got tired, and had to take the rest of feeding by his tube. That's okay. He's still working on stamina. Tomorrow he gets to try some more. He has two days left of weaning off of steroids. Hopefully he will be weaned down from his IV sugar by then too. He goes about 23 hours of good sugar tests, then one drops a little bit low. He's got to keep his sugars up and make his feedings last one to the next. That's all we are waiting on now.

He is a miracle. He did dodge the bullets. With the strength of angels, the power of prayer, love and encouragement, the forces that be held out a hand and said "no, not this child."

Tonight he rests in my arms, and the tears flow again. They are better tears this time. I look around me at the families that have so far to go...months some of them. I feel a twinge of guilt, but I can't help to squeeze this little boy a little tighter and shut my eyes tight. He's mine, my precious gift. I birthed him naturally, nearly lost him, got him back, and now I'm told I will walk away with a normal child. I will turn my back and the bullets will fall to the floor at our feet.

Normal. I never realized how not normal-normal can be. It's not so simple sometimes. Sometimes it's painstaking and slow and filled with much emotion. Tonight, I got my baby. I just don't want to put him down. There are not words to express my gratitude-for those that prayed, for those that sent positive thoughts and encouragement, to those that have been by my side from the time my water broke, those that have spent time helping with my other kids, or even spent a couple long nights at the hospital so I could sleep knowing my baby was in the best of hands, and to those who have helped financially. I hope you all are experiencing even a little bit of the awe and inspiration that I feel in my heart. This boy belongs a little bit to all of us. A very very special blessing gifted from God. My transforming butterfly-with loads of life to give and live. Tonight my heart thanks God. I hope He is smiling the biggest of all...