Before and after, you be the judge!

After coming home from the hospital, I had Jason download our camera pics. There were many images from before and after Sophie's surgery. In hind sight, I found these images very revealing about her condition. Just think, these are only 2 weeks apart.

Sophie, on the way to appointment where she ended up being admitted for surgery that evening. Notice her inability to straighten her head. Not to mention the swollen appearance of her eyes. Her mouth was also drooping on one side.

I included this image for those of you who are curious. (I would be!) This is the actual shunt site and apparently, babies heal at an amazing pace. This was just after they took her stitches out, 10 days after surgery.
At home, in abby Jenny's and Aunt Tisha's "baby Gap" bubble dress! A week after being home.
Today, with a very "strung out" mummy. (Jason says I look like I'm on something) I call it sleep deprived!
Notice her straight head, which she now holds up, and her alert appearance.
One very happy girl! Don't get me wrong, this was a brief captured moment between hissy fits!

Home again, Home again!!

We're home! Yippeee!



Of course, Sophie is now doing her thing she does after every visit to the hospital. Sleeping an insane amount. She's had two 5 hour naps with a nursing in between. I can hear her occasional squeak through the monitor, but I have decided that sleep can be a time of healing and I want her little body healed up!!!!



When she cries, and it has been witnessed by doctors and nurses, they say that it is not the "normal" fussy cry...meaning that it sounds much like a cry of pain. Knowing that is my worst enemy. My heart just breaks because I want to fix it. They have told me NO MORE TYLENOL due to the damage it can cause on the liver. They were dosing it every 4 hours for pain in the hospital. If I MUST dose it, just give it one time only was the instruction. So all the mommies out there imagine, crying in pain....no tylenol. Last night I finally gave into the tylenol and dosed her a 1/2 of an infant dose. Miraculously....20 minutes later a sleeping baby after 3 hours of crying. LORD, give me strength to deny the tylenol.

On a good note, the little one is having a beautiful day, knock on wood. She's having sleeping and waking moments, eating, looking and resting. Let's all hope we are on the mend. She sat in her bouncy chair today, looked at the butterfly hanging down and figured out (I think) that if she kicks her feet, the butterfly moves! (everytime she kicked her feet she focused on the butterfly, when she wasn't kicking, she was looking around at other things.) Who knows???

I'll post some "post surgery" pics soon! Her appearance has changed significantly to me. Her head is rounding nicely and her eyes are bright and beautiful. (and let's hope they are staying blue!)

if patience is a virtue...

If patience is a virture, I feel like a saint.

This little love of mine is challenge on patience. We still don't totally know her, since her persona changes due to her medical changes. She is beautiful on the outside, solid on the inside, and unknown in her noggin.

One personality trait: Crying....all the time. This is her only emotion thus far. She cries when she wakes, she cries when you change the diaper, during baths (usually followed by pooping herself), during nursing and especially after (due to tummy issues), while being burped, then after because it hurts.

IF she is in pain in all these moments, then I feel horrible. She doesn't deserve that. I'm also fearful that she may not have any other emotion. When she isn't "fussy", she is bright eyed, as you see in the pictures, but without a smile. She also doesn't interact with you. She may look, stare, take it in...but not much reaction except a startle reflux.

Now, we have seen what we think might be a smile, but usually she does this smiley thing, then it goes kinda joker-like on ya and the rip roaring cry follows. hmmmm could that be a gassy thing?

My new theory is going to be that she is simply taking after her father and is being a grump! hahaha Just kiddin'. He's wonderful.

So, those of you with experience, be honest! Am I expecting too much from a 6 week old? So, when are babies supposed to smile and/or interact/respond to mommies and daddies? when do the start thinking you are the most important thing in their lives?

duh

zantac, not xanax. mommy needs the xanax. hahahaha

a report from de Hotel de Hospital (aka Ruby)

Sophie and I are bedded in at Ruby Memorial Children's Hospital. We've been here since the day after our last post. (Thursday, the 14th) We went for a pediatrician appt. and she admitted her.

Here's a quick update: They think Sophie was/is having a "spinal headache" due to the fluid drainage in her head. She had a "spinal tap" during surgery (I didn't know they did this as part of the surgery). After the fluid drained, she had a sunken softspot(fontenelle) and looked a little like "Frankenberry" from the cereal. It has taken a couple days to find the sweet spot for the setting and she has calmed significantly and hasn't thrown up in 36 hours or so. Previous to this, she was throwing up 5 times a day and lost 6oz of body weight. Setting the shunt took 3-4 x-rays, a cat scan, and the neurosurgeons checking repeatedly.

In addition to this, Sophie has been put on xanax, then switched to previcid. Previcid has been working well. It's helping her sleep through her tummy aches. They think those were caused by going under anesthesia and being on pain meds. Her bowels didn't want to work and she has what they are calling "severe acid reflux" right now. I got to see this when they gave her a "barium swallow". You see her little tummy fill, then WHAMO!! Two minutes later, all of a sudden you see what's in her stomache shoot up her asophogas. All that is getting manageable, although she still only has 3 stages: Fussy, Hungry, Asleep. We will know a specific diagnosis on this tonight or tomorrow when they get someone to read the images more thoroughly. We do have the occasional 5 minutes or so that she looks up at me with wonder, and the occasional grimace, so mommy is doing better too.

Jason left for a business trip on Sunday, so I've been a single parent through this. It hasn't been too bad because at the hospital they bring me food, do the dishes, you don't have to look good, and the shower, bathroom, and Sophie are all in the same place. Ive been saying that Sophie thinks the hospital is home and home is a scary place with loud noises and only one mommy. You see, again our girl is a charmer with the nurses. Many of them even ask, "can I hold her for a minute". To which I respond, "if you let me take a quick shower while you do!" :) They do vitals and change her diaper every time, so truly...the load is a bit lighter for me here, BUT I do want to get her home soon. Mainly, because we will have no hope for a house in our future if our stay is much longer or any more extensive in care.

To those of you who are teachers or have talents with children, a word of advice/thought to ponder. I feel ashamed that I haven't used my talent to volunteer on a pediatric floor. I've often thought of it, but never followed through. Well, I've been her for going on 5 days now, and I've seen some stuff. Babies with no mommies. Children poisoned by carbon monoxide, kids who were taken from their parents for malnourishment. Folks, they need volunteers to hold kids, to sing to them, to play with them, to sit in a room while a single mommy takes a shower, etc.... The nurses and doctors work SO HARD. I've watched. I liken it to an 8 period day of school with a full moon. (you KNOW what I'm talking about teachers!) The doctor told me that they were happy to see a caring mommy like me. When I asked, "Don't all mommies care about their children??" he responded, that I"m the exception, not the norm. I started to pay attention to the amount of rooms with children with no mommies or daddies. There are many. I couldn't leave Our Sophie to save my life.

Speaking of Doctors, our daughter has a boyfriend. we LOVE, LOVE, LOVE our most common doctor, "Dr. Aaron". (his first name) He's a fill in and is actually a family practice doctor. He has gone as far as to tell our girl he loves her and has given hours and hours of his time to find the cause of her discomfort. He never forgets a detail and chases down whoever he can to get her comfortable. Another one of the attendings above Doctor Aaron is Dr. Moore. She knows us because I taught her daughter in Arts in the Park and she LOVEDD music!! Being a teacher pays off in lots of unique ways, just not usually financially. She's been extremely doting on Sophie and taken great care to getting to the bottom of things.

Lesson: Labor and Delivery department has ALOT to learn from the Pediatrics ward. They are absolutely AMAZING!!

THANKS TO ALL OF YOU WHO ARE READING THE BLOG TO CHECK ON SOPHIE!!! PLEASE LEAVE ME A MESSAGE IF YOU CAN. IT IS GREATLY APPRECIATED.

with love,
Sophie's mom

poor little thing

Sophie is not adjusting well to life at home. We have a pediatrician visit today, thank God. She has begun throwing up almost every feed and is obviously unhappy. She feeds, cries, cries harder, throws up(not spit up), and falls asleep. She wakes up a half hour later ready to repeat the whole thing over again. The last 2 doses of tylenol we give her for pain hasn't lasted long enough to do any good. Then you are in the dilemma...do you try to give her more??? She's only 5 weeks old.

We MUST get to the bottom of this! I've got to see our happy little girl again soon or my heart will break, not to mention my spirit, and the ability to function. She has to be held upright to keep her from throwing up. ie. Mommy doesn't sleep.

another quick update

So, we are home....much to the chagrin of mommy. I really liked having the endless supply of medical people on hand to help me with every little hiccup and sneeze Sophie might express. But, we are home and I'm running solo mommy now. Daddy took the day off work, thank God. I guess I just didn't realize the negative effect lack of sleep can play on a person. Its not Sophie keeping me awake, but the endless supply of stress and falling behind we have experienced reeking havoc on my mind.

I finally hit a brick wall, big time. Sophie too. We both slept solid from midnight until 6:40 this morning. I panicked!!!!! We missed a feeding and one of the possible side effects of complications is "lethargy". So, I've called the neurologist and was comforted by the comment, "both mommy and Sophie have been through the ringer....you needed to rest."

Now, the next worry....I'm waiting for a call from her pediatrician...Since Sophie's surgery, her bathroom habits have gradually slowed down. All the docs and nurses said that's normal due to anesthesia. Now, we have been home for 24 hours and I have yet to see a poopy diaper. I wish medicine wasn't so "fast food" like. She still is having effects from surgery and we are already outta there. Now, what do I do...

I guess the game is the same as before, "WAIT AND SEE". Now, I'm waiting for the phone call to tell me if lack of poop is "normal".

Otherwise, Sophie is great. She is a totally new little person. I thought she acted "normal" before, but I'm seeing the difference now. Eyes are more allert, arms and legs move more equally, she holds her head up so much better now, and her head shape/eyes/smile is getting even more symmetrical. We are still waiting for coos or vocalizations. She only makes 3 sounds: Grunt/whimper, Cry, and Cry louder. We hope the rest will start up here pretty soon! Maybe a good ol' bowel movement will inspire her happy sounds. Poor little one! Who likes that feeling???

update

still in Ruby. No major set backs, but she definitely had some tough times coming off of the effects of the anesthesia. Mommy and daddy suffered just as much. She is so very different now, like a new kid...and just when I got used to the first one. She is dreaming for the very first time, and sucking in her sleep. (has been called maggie simpson a time or two.) We are in pediatrics floor, it's Jason and my 1st annivesary and neither of us have showered in like 3 days. I've decided now that this is no longer the anniversary where you get "paper". My husband slept in the car last night because the bed situation is not existant in our room. He went to breakfast at Eat n Park by himself because I won't leave. ANYWAYS, he came back to the room with a card and a smiley cookie.

It's now the official year of the "smiley cookie" gift.

Life's curve balls

Hi all...

Well, we woke up this morning to have a normal check up with one of Sophie's doctors. Our appt. was 9:00am, so we left Grafton at 8:00. It's midnight now and our lives have been tossed upside down.

At 4 pm Sophie "went under the knife". She now has the Official diagnosis and treatment. She had a severe case of hydrocephalus. Her previous condition worsened in the last 2 weeks. Both ventricles enlarged and her left one expanded as well. She had what was called "head firming" which I noticed and reported, along with a measurement of 37 centimeters. We had the appt. already scheduled, so "the paranoid mom" told the doc(nurse practioner for doc) that I was concerned. She was taken for a precausionary CAT scan today. (in Carol's husband's part of the hospital) The pictures scared the crap outta me and the doc. Basically, the image was sent directly to the doctor and by the time I walked back up to the floor, she was prepping me to go to PICU and admit her. Her surgeon was paged and reviewed the images WHILE he was in surgery with another patient on some kind of fancy computer imaging thing. He took her in directly after that surgery. She's had brain surgery and now has a permanent shunt to drain the fluid and reduce pressure. Her head will look a bit scary with the shunt and drain showing through her skin until she grows hair.....plus they shaved half her head. She didn't feed for 9 hours (empty stomache for surgery) and fed so strongly when they woke her up that she is out like a light.

She is doing very well and is quite the fighter! She has been the perfect baby in PICU and every one who walks into the room says she is amazing and beautiful. She has smiled and made funny sounds and stared at eveyone like she knows them. I see a difference in her appearance and think she must feel better. When she came out of surgery, they came and got me saying that baby needed the mom. When I walked back, there were 3 nurses all standing there with screaming Sophie saying, "It's breaking our hearts! She wants her mommy to feed her! Go ahead and do it!" They all preceded to stand there and oooh and aahhh at her while my breasts were flying for everyone to see. Once she fed, they just wanted to hang out with her and sat and chatted with me and Sophie until they needed to take her to PICU....tucking her feet under the blanket, giving her warm ones, chatting about how pretty she was...

A totally different experience than the last time I was at Ruby. THANK GOD and thank these people. They have been fantastic so far.

On another note, Jason had a scare today involving a pick up truck, a trailor, and 3 tons of wood. He barely made it to the hospital, but that's a differnt post! I'll fill you all in about both Sophie and Jason when we get out of the hospital. Just thought you should know.

to pacify or not to pacify...nuff said

4 week birthday girl Sophie with a pacifier....
But Mummy....where did it go????
GET ME MY #$%%$#@%@ PACIFIER WOMAN!!!
Check out our milk belly! Tie Dye brought to you by Sarah Guerry, the art teacher at my school!

Daddy's idea of a funny! Our little poop head!