Saturday, December 27, 2008

Jersey Pants

A really long Jersey post.... Oh, just a little warning: further on there are some semi-graphic pictures the faint hearted may not want to view.

This darling tree was given to Jersey by our sweet friend who knows she wants to be girlie with hair bows and bracelets but can't right now. She decided the next best thing would be a pink Christmas tree...she was right! Auntie Brooke bought the perfect hot pink bulbs to adorn the already darling tree. After Jersey got her tree we started to notice other rooms decorating with trees, of course their's weren't half as cute as hers. She's already a trend setter!

Daddy and his girl. He's like a papa bear. Cute and cuddly on the outside but fierce and protective of her on the inside. Watch out!

Here's our most recent picture of Jersey Girl. Her hair is growing back slowly and doesn't look half as silly as it did. If you'll remember it was shaved in a failed attempt to get an iv in weeks ago. The 2 tubes on either side of her chest are draining tubes that drain extra blood and fluid from her heart, a completely normal procedure for heart surgery. And then there's her Frankenstein scar. This was the first time we saw it undressed and it looks awful. Typically a little chest is glued shut but Jersey seems to make everything difficult. Because she was so swollen the surgeon had to pull her chest shut and needed to suture it in order to keep it shut. I was looking forward to her little chest with a zipper to her heart but this won't heal as pretty as I hoped for. I'm trying to look at the positives like: at least she's come far enough it was able to be closed, and they have to open her again to close her sternum so maybe the next time she's closed we'll get a better looking chest, or maybe her chest will look so awful it'll keep her modest and away from bikinis!! It's such a minor worry in the grand scheme of things.

On Christmas morning the surgeon told us they, as in him and all Jersey's doctors, are hopeful. HOPEFUL!! It only took them a whole month to tell us this but it means Jersey if FINALLY getting better! Merry Christmas to us! She's made some big improvements over the last 2 weeks and the doctors are FINALLY optimistic. It's been such a long and difficult road with so many unexpected issues but to hear her surgeon say he's hopeful means the world to us. We cling to every word, good or bad, the doctors say. Every facial feature, every whispered conversation, EVERYTHING is clung to and analyzed by us. It's vicious and no fun but it's life in the hospital.

We had a bit of a scare earlier in the week. My Mother Dearest was taking a shift with Jersey as I caught a wicked cough/cold and wouldn't be around her. I had just talked to Jersey's nurse, whom we love, and everything was going good. Five minutes later I get a text from my mom saying that Jersey's RA line (a line that feeds directly into her heart where medication is given) had accidentally been cut and the room was quickly filling up with doctors. PANIC! I'm 45 minutes away with the blondies and there's NO way I could be there any time soon. I get another text saying there was a big machine being wheeled into her room. My poor mother has no idea what anything is and so I assume the worst. I get anther text saying there's 8 people in the room and 2 units of blood have been ordered and everybody is on their phone calling somebody else. PANIC!! My heart sank, why today when Chris or I can't be there? What machine?? Why extra blood, is she bleeding? What doctors? Is the surgeon on his way? By this time my hands are shaking and I can hardly dial the phone to call Chris. He was at the ASU basketball game and so he was only a few minutes away. Thankfully everything turned out just fine. There were no medications running through the line at the time and there was minimal bleeding, the blood was ordered as a precaution. The RA line was removed and a new line, a broviac line (another long term iv placed in her left thigh) was placed by the surgeon. The machine brought in was an echo machine (a machine that does ultrasounds on her heart) which is done periodically anyway. My poor Mother was traumatized for the rest of the day and rightfully so! Her left leg, the leg the new line is in, looked discolored for a few days which was a HUGE worry for Chris and I. We simply can not have her entire leg turn out like her right foot! It's looking better now and the doctors are watching it closely.

She's lost the majority of her fluid and she continues to lose more everyday. She's looking more like her precious little self. She has been completely weaned off a medication called vasopressin. This medication helps with her blood pressure by constricting her blood vessels to increase her pressure. Basically the vasopressin clamps down on the unimportant things like her kidneys, tummy, extremities, and sends blood to the important things: her heart and brain.When blood vessels constrict, the flow of blood is restricted or decreased which means she can't have anything in her tummy as blood isn't going there. The beauty of her being off that is NOW SHE CAN BEGIN FEEDING!! Today for the first time ever, in all of her 32 days of living she got something in her tummy. She was started on breast milk at 1 cc/hr. Five cc's = 1 tsp so it's a very, very small amount but it's a start and we're excited. We aren't quite sure if she's tolerating it yet, she'll have x-rays done and her belly is being watched for any distension (stomache swelling). She's gotten to the point in her recovery where she won't recover any further unless she is fed. Poor nutrition has played a huge role in her not healing. Her tissues are poor and her scar looks rotten due to her nutrition. She's been on TPN (total parenteral nutrition which has vitamins, salts, and sugars) and lipids (a fat) but there's no replacement for real food. She's had several hurdles to leap before she'd be fed and she's made it so far. She's also coming down off her epinephrine and is completely off neosynephrine, both are medication for her heart. She's been on nitric oxide as well as oxygen and when she was taken completely off the nitric she didn't tolerate it well so she's back on. When she's off the epi she'll be given sildenafil (viagra) to replace the nitric. Sildenafil sounds better than viagra don't you think? The last heart med to go will be dopamine. The very last medication to wean her off of will be her fentanyl, a pain med. She's on such a high dose it'll take quite a while and she'll have to be given methadone and adavan to treat her withdrawls. So, for the record, she's coming off of epinephrine, dopamine is next, followed by the nitric oxide, and lastly fentanyl and adding sildenafil, methadone, and adavan. Sheesh!

While she's doing so good in so many areas her kidneys still aren't functioning. Over the last several days she's produced no urine until today, in the last 22 hours she's had 3cc's, a healthy baby will have 75 in a 24 hr. period. She had a renal ultrasound done and we're still waiting for the results. The specialist thinks they may still be living but we won't know until her ultrasound is read. Now that she's off the vasopressin we're hoping to see a better urine out put. The specialist is talking about permanent kidney dialysis and possibly a kidney transplant. If there's no improvement in her urine output he wants to do surgery next week to place a permanent catheter for dialysis. WE NEED HER KIDNEYS! The doctor emphasized how sick she will be with both her heart disease and kidney disease. Pray she pees!!

Now her foot. The picture on the left is a before and the right is a now. One may not agree but it's looking much better! In many spots it's pinking up except for the tips of her toes. There's still talk about amputation of toes but we can kiss a couple of them good bye if it means she can keep her foot! The nurses have been putting on nitroglycerin paste and have recently switched to silvadene. It has an antimicrobial agent and is typically used on burn victims. If you look closely at her foot you'll see blisters and opened sores. Poor little foot. We're so pleased that it's healing!!


Heather said...

What a pretty tree for a pretty girl. I can see sass & plenty of girliness in her future, just like her sister.

I am so glad progress has been made, as always you are in our prayers and we will definitely pray for Jersey to pee.

Tracy said...

Dear Anderson Family,
We wanted to tell you how beautiful your lil Jersey girl is and to let you know you have people in Iowa praying everyday to bring you strength, love and hope.
We are so happy she's improving!
God be with you and bless you.

Iowa families care!

Kippy said...

I always love hearing of ANY progress. You guys are amazing. We love you and really can't wait til we can finally meet this Jersey-girl. She is a fighter. And I'm wondering if her hair is going to fall out and come in blond??

Kate said...

YOu are so good to keep updating your blog! It's not like you don't have a million things going on! I love you guys! I will pray for pee and kidneys! She is darling!

Shanen said...

What a wonderful update. I am so glad to read ALL the details. I fill informed again after not having talked to you for so many days. I hope you are feeling better and it looks like Christmas was a success. The blondies look so cute on their bikes. I LOVE the pink tree and the black and white blanket under it makes it perfect. I am glad the hospital allowed it. We will pray for her kidneys and any amount of pee, she is making some great progress. We are so proud of her and you guys. You are doing great!!! Love you guys.

Janalyn said...

I love Jersey's hair, it reminds me of Tatum's when she was a baby! What a beautiful girl she is.
I'm in awe of what sweet, precious bodies can endure.
Do you love how your whole vocabulary has changed, remember a month ago when you didn't know what TPN or Fentanyl were. Sort of sad, kind of exciting.
Thanks for your kindness about Cis' trach, it was really nice to hear.
Give your little fighter princess a kiss for me!

The Ridgway Family said...

I so enjoyed reading the update. I will agree with you that Jersey's foot does look better. Can you believe the medical education you and your husband have received in just over a month? I used to joke with Eden's nurses that I could jump right in and take their place after 4 months of learning. Personally though, I think it's an "on the job" education that no one should have to receive! Heart mommies can follow every word and we definitely have our own language.

I pray for Jersey and your family daily and I will pray that her little kidneys will begin working. What a difficult road our little ones are asked to travel, but they teach us so very much and I believe that we are better mothers for having them.

Love, Keisa

The Galvan Family said...

What a beautiful tree for her. I am so excited for you that she is doing better. I hope you had a Merry Christmas! Your family picture is the best one we received! We are all praying for you.
Love the Galvan's