Tuesday, December 30, 2008
Having said that we have to take the good and the bad, unfortunately. She has a condition called chlyothorax. I don't really understand it so I won't try to explain it. But what I do know is it causes an excessive amount of drainage out of her left chest tube and she's been switched to a special formula for her feeds rather than breast milk. Her doctors are worried that because she's draining so much her already rotten nutrition is even more compromised. She's plateaued and won't get much better if she isn't fed and she can't be properly nourished until this chylothorax is taken care of. Also, she needs to be put on permanent dialysis for her unfunctioning kidneys so her poor little body will have to endure another surgery with 2 different things on the agenda. Her doctors want to take advantage of her stable condition in hopes of an easier recovery.
Her surgery is a relatively low risk surgery but I'm not sure I can handle a repeat recovery from these last 4 weeks. I'm terrified she'll come back to us looking, acting, responding horribly. It's taken her 4 weeks, 4 weeks to stabilize since her surgery.The doctors still have no answers as to why she did so terribly, what if it happens again? I anticipate taking a step or two back but I'm not prepared for any more than that. I'm amazed at what her little body has already survived and I think it unfair to ask her to do it all over again. What was she thinking when she raised her hand in Heaven and signed up for this? She's a fighter as she has already proven, if she can endure this life of surgeries, sickness, and unknowns surely there is a throne waiting for her.
Saturday, December 27, 2008
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!
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!!
Friday, December 26, 2008
Santa didn't over look Tatum and Tucker this year, he managed to pull through and bring a few loved presents. Their fun gifts this year were "two wheel bikes with no training wheels". They were both thrilled to try them out but unfortunately it rained ALL day!
Tuck got this "motorcycle" helmet that he thinks is the best thing ever. Tater got this cd player she has constantly played. She loves music and she loves to dance to it even more. She got some cd's of her very own and she thinks she's big stuff!
Every family has to get a Christmas family picture, here's ours.
ALL the girls. The boys.
Tuck getting ready to attempt his first bike ride. It's serious business and he's ready.
We had such a fun, busy day. It was so nice to be together, just the four of us on Christmas morning. It's rare these days when it's just us four and on a special day such as Christmas where no whining or impatients or selfishness is allowed it makes me SO grateful for what I have. After a full day of Santa, the hospital, both grandparents, cousins, and bikes the blondies were more than ready for bed. They simply HAD to sleep with a favorite present, Tatum with Bubblegum the baby horse and Tucker with his "motorcycle" helmet and his Ironman. Chris and I ended the long day with his new movie The Dark Knight. It was a great day...I can't wait for next year when all 5 of us can enjoy each other and laugh together!
Monday, December 22, 2008
She's finally looking presentable enough to bring Tatum and Tucker to the hospital for a visit. Tuck likes looking at her for about 2 seconds and then moves on to better things, like cookies. Chris asked if he'd like to be held up again to see Jersey and he responded, "No, I don't want to look at that." Some day he'll understand. Tatum on the other hand doesn't seem to see any of "that". She is thrilled just to touch her leg and rub her head. She loves to stare and sing to her. It's funny the difference. Is it the age difference? Boy vs. Girl? Personality? Perhaps all of the above.
Here's the Little Miss, and no she's not awake, she likes to keep her eyes open while she snoozes. While visiting her yesterday she was very awake, I've never seen her so awake and so active. Poor thing. She was given Adavan to knock her out again. Today she was on a constant drip of it to keep her asleep. Who would want to be awake during this, NOT ME! She is looking SO good! Her ears are better, we can almost fit a head band, and she can actually straighten a leg...well almost. And amazingly, her sweet foot and toes are looking better. They still look dreadful but they are pinking up in several areas. Looks like she'll still be able to twirl!
You know, it's funny what they say, but we can actually feel the prayers of the so many people who pray for our sweet Jersey. I admit, I've been quite the judger, when people would say they could feel prayers I kind of smiled to myself thinking "yeah, sure", but it's true. In so many ways we have been and are being humbled. It's very over whelming the love, sacrifice, and support others have given and shown us, and some we don't even know. From scrubbing our nasty showers to giving us money so many people have been amazing examples of love to us. When we've been too tired and heart broken to function we've felt nothing but love and encouragement. Our families have absolutely saved us and our ward is simply the best. How do you even begin to say thank you when thank you just isn't enough?
Thursday, December 18, 2008
Wednesday, December 17, 2008
Monday, December 15, 2008
On the home front Tatum and Tucker have become quite the hand full. They are wired and naughty when usually they are darling and obedient. I know it's because they need our love and attention but it's quite hard to remember that in the middle of the third major meltdown. When Chris and I are exhausted physically and emotionally we want to come home and be with our "normal" blondies who aren't their normal darling selves. Instead of a fun evening together it usually ends with tears and fits. We constantly remind ourselves "this is only temporary" and while we understand that T&T don't. We'll recover, they'll recover but it's SO difficult while we're in the thick of it. We love them dearly and want to be/do everything for/with them. All in good time. How much we'll appreciate being a normal family some day!
Friday, December 12, 2008
Thursday, December 11, 2008
Today, Thursday, has actually been a pretty good day, knock on wood. For starters her blood pressure is up from the 33/24 to 69/35, that's really good for her. Because her blood pressure is up she's been producing a little urine, not much but any production is awesome, her kidneys are coming back! She's also, through her cath, lost a little fluid. You couldn't tell by looking at her but she's negative! Her heart is beating stronger than ever and her color is looking pretty darn good. Yesterday she had a yellow/greenish tint but not today! Her lungs are sounding good which is also an improvement. Her sweet foot looks a little better but still pretty sad. She's been weaned down on her epinephrine, a potent drug for her heart. Both her surgeon and the ICU doctor seemed optimistic today that perhaps she's turned a corner. Slowly, slowly over the last 2 days things have seemed a little better.
Chris and I have very much needed some good news. We've both been feeling discouraged and depressed. I've let my mind wonder to the possibility of loosing her and before I was quite certain it would end that way but now it doesn't feel right. The road ahead may be long, slow, and frustrating but I feel like she'll recover. I look back and see how my prayers have changed. In the beginning I asked she be healed quickly, right now. Then I asked for Him to take her, give her tiny body rest, let her quit hurting. Now I ask for even the slightest bit of improvement, no matter how small, as long as she's improving let her healing take as long as necessary. We want her home and in our arms desperately but as long as we get there, even if it takes months and months we'll be happy and grateful.
Monday, December 8, 2008
Tomorrow she'll have a few procedures done. Hopefully she'll be off the ECMO so the surgeon can work on her. It's important to be off the ECMO because her blood is thinned and any surgical procedure done will make her bleed and with thinned blood ANY bleeding is dangerous. She needs a new ART line, an IV in an artery where blood is drawn and her blood pressure is measured. Her foot is purple and her leg is splotchy because this line is going bad. She'll also get a P.D. cath to help remove fluid. It also acts as dialysis as her kidney function is zero. Last but not least, the surgeon may go into her chest and clean it out and remove some fluid that has built up behind her heart. It all sounds scary to me but I know it's nothing compared to her first surgery.
It's so nice to FINALLY be getting some good news. We've only had bad news since she was born. Prayers and fasting work of that we are convinced. Yesterday she turned a little corner and today she's still improving. Although this is the hardest thing we've ever been given the blessings have been countless. It's amazing to look back over the past 10 months to see how the Lord was preparing us, he truly was!
Sunday, December 7, 2008
Here's some emotions I feel while I'm in the hospital:
*despair that things have been getting worse
*gratitude when I hear beeping monitors that aren't Jersey's. And grateful when I see nurses frantically running about grabbing doctors and drugs to help another child and not my sweet baby. Sounds ugly I know.
*frustration that as her mommy I'm helpless
*impatient for her to get better and come home
*stress when I hear her monitors or watch her stats lower or watch the nurse get on the phone to alert the doctors of problems
*heartache she has to endure everything she's going through. Heartache we can't take her home. Heartache that her big sister and brother can't hold her or kiss her cheeks.
*thankfulness she's ours and that she's still here, fighting
*peace as I know she's perfect and special
Just a few of the zillions of emotions on this roller coaster of our lives.
Friday, December 5, 2008
Yesterday the doctors and her 2 nurses worked on raising her blood pressure. A low blood pressure means her organs aren't receiving the proper amount of oxygen and if this happens long enough they shut down. To keep it lowered they almost continuously pumped fluid into her. Because she's so sick her veins don't hold the fluid, rather it leeks out into her tissues making her extremely puffy. Other than that her little body seemed to do okay with no major alarms.
Here's a little tour of what's keeping her alive. This is the ECMO machine that basically acts as a bi-pass and dialysis machine which is basically life support. With out this machine she would only have a 10% chance of survival. How it works is deoxygenated blood leaves the tube on her left, runs through the machine and then returns on her right with the oxygenated blood. It's acting as both her lungs and her heart. The nurses, surgeon, doctors, and ECMO tech are pretty vague on what exactly it means that she's on this. From my asking questions and researching it on-line I've learned that only the very worst cases need this machine. She is so critical that this machine is used as a last resort. She's hanging on but barely, maybe by half a hair. Not to sound dramatic but it's the truth.
These funny contraptions are pumps that pump her medication. 13 pumps in all and 4 drips. The monitor in the back ground is for her vitals. This is the machine that beeps when things aren't right, the one I can hardly peal my eyes away from.
This is her sprinkler system of tubes. This picture shows only most of her tubes, there's still more, they're just hiding.
Wednesday, December 3, 2008
At about 9:30 pm our surgeon came into our room to explain what had happened. He explained that he fixed the issues with the heart. He repaired the VSD (hole between the right and left ventricle), put in a donor pulmonary valve and trimmed the pulmonary arteries (they were blocking her airway). He said that overall the surgery on the heart went well and that her heart function should be good.
Then the bad news. He explained that her major issue is her lungs. Her airway didn't develop properly thus making it very difficult to breathe. The airway is much smaller because the pulmonary arteries were blocking it while she was in the womb, inhibiting growth. He explained this will be something we will need to deal with for "a while". Now we were prepared for this, but not to this extent. She will need some breathing aids until her airway develops more, and only time will tell.
The doctor also explained that she is coming back from surgery with something called an Extracorporeal Membrane Oxygenation (ECMO). What is an ECMO? This is a special procedure that takes over the work of the heart and/or lungs when they are too sick to properly support the body. The ECMO machine basically acts like a heart. This is where her blood will go to be oxygenated and sent to the rest of her body. This machine is very similar to the by-pass machine used for open-heart surgery. Very scary to think our little baby’s blood needs to be run through a machine before it gets sent to her little body.
Once our doctor explained all this we were pretty much in shock. We were both heart broken to hear the severity of everything, especially the lung issue. But nothing could've prepared us for what she was going to look like post surgery. Anyone who has had a baby have open heart surgery knows what I'm talking about. When they wheeled her in my heart sank. She looked like she went through 15 rounds with a professional boxer. She was swollen, beat-up, bruised, cords everywhere, IV’s everywhere, etc. She was surrounded by an army of doctors and nurses to help stabilize her. We just stood there not knowing what to do or think. One of the nurses suggested we wait in the waiting room until she had been stabilized. We took her advice. We waited until she came back in and explained everything in greater detail. She prepared us for what we will be going through for the next several weeks/months. Hopefully we are semi-prepared.
Right now she is attached to every machine imaginable (ventilator, ECMO, heat, drugs, nutrition, etc) and is being closely monitored by three nurses. They told us these next few days will be critical. In about 24 hours they will hopefully start weaning her off the machines. Once this happens we will just have to wait and see how she responds.
I'm sorry for the rambling, but I wanted to be as detailed as possible. We also wanted to thank everyone for their thoughts, prayers, blessings, babysitting, dinners, phone calls, text messages and cleaning (special thanks to Mandy, gross). Our families have been AWESOME, too! Heidi has been a trooper throughout this whole thing and I want her to know I love her very much. Tatum and Tucker have handled the chaos very well and are anxious to get their baby sister home. Last night Tucker prayed that Jersey would get all her cords off so she could come home. They are going to be the best big brother and sister!!!
We know Jersey is a special girl and we can't wait to hold her in our arms. We know with the help of Heavenly Father she will recover and be home before we know it.
She has had a pretty good last 2 days, she's been a little more stable and she's even begun opening her eyes. I was lucky enough to have 3 hours last night with open eyes and alertness and then again this morning. It was nice to sing and read to her and hold her hand. I wonder if she knows who I am or what she means to me. It will be a very long day, waiting, wondering, praying, and hoping.