Monday, January 26, 2009

Eye Numbing & Bible Thumping

It's hard to believe it has been almost an entire week since I last posted- I spend my last waking moments each night thinking about what I'll write about the next day, but then run out of time, and a week flies by....

We're back in the NICU after a small battle. I was really excited to be back, it feels more like home, despite losing our couch, TV, and the ability to have food and drink. Now I'm sequestered to a corner while I watch my baby in a Giraffe (a bubble of sorts- isolette) rather than in an open air crib. If ever the saying, "Two steps forward, one step back", applied, this would be the situation. Coming back to the NICU the nurses and doctors were unable to find a happy ventilation setting for Ms. Grace. They tried the traditional ventilator without success, then the jet ventilator which was equally as unsuccesful, and finally the oscillating ventilator. Grace did well on the Oscillator, except she wouldn't allow the machine to do all the work, so she kept attempting to breath over the machine, or behind the machine. She would do what they call see-saw breathing, which is type of quick pant then long breath style. Late yesterday they attempted to go back to the traditional ventilator- SUCCESS! She's so much happier and feels better. She had a rough night last night, she was still not getting enough oxygen saturation even @ 100%, so they think it's pain, not lung related. After an IV dose of morphine, Grace conked out and went to sleep happily. Now she's down to the 40's range, and they are talking about taking her off the vent!!! I have learned not to get my hopes up, as I am usually dissapointed, so I'll plan for her being on the ventilator for another week or so.

Grace had her eye exam today- OWIE!! The eye doctor numbs her eyes, then puts a spring-type mechanism on each lid to keep them open, while he moves her eyeball around with a speculum- ick!! Good news- her eyes are almost mature, with absolutely no signs of retinopathy of prematurity. I couldn't even tell you what that is, only that it's a very good thing. I've learned through this process of being in the hospital- NEVER read about what could happen- it will depress you, worry you and haunt you. I vowed to only read about what is happening, only after we have the official word- there is absolutely no use getting myself and my family worked up for nothing. For example, when Grace was first born, the docs let us know that her heart condition is often related to a specific gene disorder. I requested the materials about the disorder, but vowed not to read them. My mom and Pam, on the other hand, did read them. Every day they would ask me if the results had come back- I didn't really understand why they were so interested, but when they came back negative, both of them started to cry tears of happiness. While I was cleaning out my diaper bag I found the material, flipped through it, and thanked God that I had not read it- very grim things....

Grace's chest tube is set to come out today. From what I understand, this is one of the most painful things that people endure- the chest tube is hooked up to a sort of vaccuum, so your wound is continually being suctioned.... She definitely favors the alternate side- the side without the tube. She was going to have the Broviac removed today- the central IV that's stitched into her thigh, but they're thinking tomorrow, so that if she has another pain episode tonight, they can give her morphine intravenously.

All of this seems like such good news- I feel like we're really making progress. Unfortunately, I may be a bit too optimistic! I spoke with Grace's NNP and MD and told them that my family was coming to visit March 14th, and did they think we'd be home by then. They told us that barring any unusual circumstances, infections, etc we'd be cutting it very close- SERIOUSLY?!? That's almost 8 weeks away!!! It's so easy to get frustrated about this, I often do, but then I remember the alternatives- coming home too early and being back here too soon, being at a less-capable hospital, or not even knowing she had these issues. God helps me put things into perspective. I say it often, but while I would NEVER wish this experience upon anybody else, I do thank God that we're here at this hospital, with the excellent nursing staff. Grace is spoiled beyond belief!

She's getting so big- it's funny, her head is so much bigger than her body, like a little bobblehead. :) She has the longest fingers and toes- she's destined to play the piano. She's over 5 pounds now- well on her way to becoming a big girl! She's eating the most she ever has (fat-free formula) but she's doing well. Hopefully, if the ventilator comes out, I will hold my little angel later this week.

Life is good- stressful, frustrating, dark at times, but good. I've learned that my worrying is for naught- I have no control over what could or will happen. My faith has been brought into question throughout this entire experience, but I think in turn, it has made me more faithful. To some of my friends, I probably sound like a Bible-thumper now- and that's probably a shock to many of you, and maybe I am, a bit. However, you simply cannot go through something of this magnitude and watch the amazing changes that I have seen and held, and doubt. God is here, and God holds Grace's and my hands every day!

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Wednesday, January 21, 2009

Unanswered Prayers

Whew! We made it through another day! It actually sounds like we'll be moving back to the NICU in the morning, which I'm looking forward to... one step closer to home! Of course, I also don't want to be so over anxious and excited about going home that I rush her. The last thing I want for Grace is to end up back here sooner than necessary. Grace had an ultrasound this afternoon to see why the sudden fluid became present. The concern was that with her neck IV there may have been some sort of clot present that kept the fluid from moving around the area, accumulating in the pleural area around the lungs, causing her to have difficulty breathing.

Good news- sorta.... It's not a blood clot! Unfortunately, it's a pleural effusion. Here's wikipedia's definition:

Pleural effusion is excess fluid that accumulates in the pleural cavity, the fluid-filled space that surrounds the lungs. Excessive amounts of such fluid can impair breathing by limiting the expansion of the lungs during inhalation.

If you were to look it up it would scare you, because it goes on to say that it's mostly occuring when there are life-threatening issues... but there is a one-line blurb that explains Grace's difficulties:

Pleural effusions may also occur through medical/surgical interventions, including the use of medications (pleural fluid is usually eosinophilic), coronary artery bypass surgery, abdominal surgery, endoscopic variceal sclerotherapy, radiation therapy, liver or lung transplantation, and intra- or extravascular insertion of central lines.

Essentially, they were in chest mucky-mucking around, taking lines in and out, and this jarred some of the lymph fluid, which leaked into the pleural area, causing Chylothorax.

Now for Wikipedia's definition of that:

A chylothorax is a type of pleural effusion. It results from lymphatic fluid accumulating in the pleural cavity. Its cause is usually leakage from the thoracic duct or one of the main lymphatic vessels that drain to it. The most common causes are lymphoma and trauma caused by thoracic surgery. The effusion is characteristically white and milky in appearance and contains high levels of triglycerides.

So- basically, we all have a pleural space, the area between our skin and our organs, and when we cut ourselves, we experience a sort of weepage, a really clear watery-like fluid that leaks from the wound. This is what comes out of her chest tubes typically. They sent some to lab, and they found high, high levels of fat and triglycerides. To overcome this, they've put her on a fat-free diet, basically mud-tasting formula.

Which brings us to the ultimate good news.... let's circle back a few weeks. I originally tried breastfeeding for Grace. I took hormones, wore patches, pumped, the whole nine.... but was MISERABLE! The hormones made me so sick, so I eventually stopped taking them. The whole concoction (breast pump rental, meds, etc.) was costing me over $200/month and I still had no guarantee that I would be succesful. I was upset, but figured God had a plan for us.... and so He did..... Because of Grace's chylothorax, she can't have breast milk.... for at least 6 weeks, by which point we BETTER be home or getting ready to go home! She'd be getting ready to start a full-formula diet with us, so this is an easier, gentler transition for her to get used to the formula. She was able to use the breast milk up to this point to grow strong, and I really think that this helped her heal quicker after her surgery.

I have to remember to trust.... I think of that Garth Brooks' song again, Unanswered Prayers. I was so pissed that I couldn't handle the hormones, and pissed that I failed at breastfeeding. I felt like a horrible mother, but even had I perservered, my daughter wouldn't have been able to have it- so you sometimes have to trust, even in the yucky times. This little girl has already taught me so, so much. I still have so much to learn!

The contact agreement didn't happen tonight.... We agreed to talk at 7 pm, but it's now 8 pm, and still no call.... I'm not going to beg her to talk to me, so I'm going to get a good night's rest and be wide-eyed and bushy-tailed for my little angel tomorrow morning.

Good night!

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Grace and I had a rough morning today- imagine walking in to your daughter's room and she's surrounded by nurses, doctors, etc. and you have no idea what is going on.... that was my morning wake-up today.

Over the night, Grace had some chest xrays that showed excess fluid in and around her lungs. Her surgeon thought it best to put in a "ponytail" tube to drain the fluid. Unfortunately, they forgot to tell the mom or dad, so I essentially walked into the recovery aftermath. Grace's blankets were soaked with blood, chest fluid and other yuckies, and she was temporarily paralyzed by anesthesia. I was so pissed off when I walked in- like I said, you become fiercely protective of your children- I wanted to shake someone!! My subconscious told me that they did what was needed, but my emotional side wondered what would have happened if something went wrong and I never got the chance to be with my baby?

The surgeon and team profusely apologized- I felt like an ass even questioning it, but my emotions took over and soon I was a hysterical mess- and then Grace woke up and had tears rolling down her cheeks... that put me over the edge.

Every day I endure this process- I give up my most precious gift to those that are more knowledgeable and skilled than I am, hoping that they have the strength and know-how to fix my baby. Every day I endure the hopes, the fears, the tears, the smiles.... it's so emotionally exhausting! I wonder when I'll "wake-up" and actually feel normal- will it be when we go home? will it be when she catches up to her "real age"? Will we always feel this scared? Will our lives always be tied to the skills and know-how of a cardiac team?

I want nothing more than to make this all go away for her- I only can hope that she doesn't remember any of this, but then I remember she has years more of surgeries... how does any child go through this? What baby deserves this?

So, I'm done with my pity-party now, just a really, really rough morning.... The birth mom wants to spend a day alone with Grace, without Felix or me present. Not quite sure how I feel about this at this point, but because we're still not in the driver's seat, I have to go along with it. I'm sure everything will be fine, but again, the fierce mama in me comes out and I want to ensure her safety, and happiness. We have to talk later this afternoon to work out some sort of contact arrangement. Hopefully, it is a compromise for both of us, not just me giving in so that Grace can be my child forever, but we'll see. I really would pretty much do ANYTHING for this little girl.... but I'll be strong.

I need to feel progress- I need to feel like we're getting somewhere- in every aspect of my life. Are we going to make it financially? Are we going to ever leave the hospital? The Ronald Mcdonald House? The cardiac diagnosis? The danger zone?


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Monday, January 19, 2009

Grace Loren

20. with good grace, willingly; ungrudgingly: She took on the extra work with good grace.

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Fallen Chest Tubes

It's been so long since I've posted! It's unbelievable- you would think that I have nothing to do as I sit here at the hospital, but I stay so busy watching her, and holding her hand.... I get carried away and lose all sense of time. I literally spend 12-15 hours a day in this room! I cannot even believe that....

We've had quite the journey this past week- her chest was closed, a chest tube fell out, another started to fall out and leaked all over her.... I came in one night to give her kisses before bed and thought she had peed all over herself- literally soaked! Unfortunately, it was chest fluid- ick!! She's now off all of her pain meds (fentanyl, and morphine) but because of withdrawals she's getting a few doses of methadone- my baby the synthetic heroin addict... gotta love it.

She's feeding good so far- @ 3 cc's per hour, continuous with them bumping her up a cc every 12 hours. The last and final obstacle is her breathing... She's still on a ventilator and still gets blood transfusions every few days. The ventilator has been dialed down quite a bit, but she can't seem to do it all on her own. Unfortunately, I can't hold her until she's completely off the vent- so this week will be 2 whole weeks since I've held her! Pure torture! They're talking about moving us back to the NICU to grow her and have her work on normal baby functions, so I'm still hopeful that we'll be home in the next 3-4 weeks... but no one ever gives you a date.

We've watched more friends come and go, and we've made new friends with the nurses. I'm still living @ the Ronald McDonald House, but Felix had to move back home- our dogs are not having us being gone so long- Tossy actually ran away. I have good days and bad days. It's funny, I'm so strong and optimistic with everyone, but sometimes I have to fall apart too, so I usually do it alone at night. I spend a lot of my time worrying, but I hear that's a normal function of motherhood.... and that I should expect to keep worrying for the next 30+ years!

I cannot believe how big my little girl is- I can only imagine that time FLIES by! She's already looking around, grasping my fingers, responding to voices, kicking her feet, waving her hands, etc. She's 4 lbs. 13 oz and 18 inches long! She's gained basically a pound and 1/2 and grown 2 inches since birth. She's a beanpole! I figure I'll be able to share shoes with her when she's in 3rd grade, and after that she'll tower over me.

My motherly instincts are here in full force- every time someone comes near my little one, I get all tight inside and anxious, wondering what they're doing to her, and I know when she is and is not happy about things. It's amazing... I used to wonder, often aloud to friends and family, if I would love this little girl like my own, and if she would love me. The answer is YES! YES! YES! From the moment I laid eyes on her, we were bonded as mother and daughter. I'm fiercly protective of her, and so in love with her. I melt watching Felix have daddy time with her- it's so genuine, like seeing a whole new person, absolutely wonderful.

Our 1st court date is January 30th. On that date, Danelle will sign the consent to adopt and then we'll file for our final court date. The final court date (could be 2-3 months from now) is where they'll sever everything... we sit on hot coals until then! I'm sure everything will be fine, but I still can't wait for that day to get here.

My mom restored my christening gown. I found it in a moldy pile of stuff in the garage and my mom gave much TLC to it, and it looks brand new! My daughter will officially be baptized in the same gown that I was almost 30 years ago. I couldn't have asked for more! I'm almost done with her baby blanket- but I think I'll need a 2nd ball of yarn to complete it. She better love the thing- it's taken me FOREVER! :)

As always, I'm in love- she's rocked my world, that's for sure! God Blessed me with Grace! My Amazing, Amazing, Amazing Grace!

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Monday, January 12, 2009

Monkey-See Monkey-Do

I asked the docs and nurses for Grace's full diagnosis today- ready for it? Tetralogy of Fallot with Pulmonary Atresia with VSD, Persistent Ductus Arteriosis, and Hypoplastic Pulmonary Arteries. What a mouthful!! Basically, she was born without a pulmonary valve, her pulmonary arteries are very tiny, there is a small hole or disconnect in her heart and her PDA doesn't shut on it's own. I cannot believe how much I've learned about cardiac conditions over the past month- I almost feel like I could teach a class! Today we were told that Grace may have some lung disease as well, due to her prematurity, or possibly even because of drug exposure in utero. The lung disease may not affect her at all as she grows, or it could be similar to her having asthma. Either way, she'll be somewhat more receptible to upper respiratory infections than other kids, especially in the cold winter months. So let's all praise God that I live in perhaps the warmest state in the nation during the winter months. I suppose the only better thing would be Florida, but I won't budge on that one! Her chest closing got delayed for now- they want her to lose a bit more fluid. Her chest x-rays look really good, she's lost TONS of fluid since her initial surgery. They suspect she'll be on the ventilator another week or so, and possibly be home within the next month!! Yippee!!! Everytime they say that though, I try not to get my hopes up, it always seems to get pushed further and further out. Grace was adorable this morning- she was fine until she heard my voice and then she started to cry and reach out for me, quivering her chin like a perfect little drama queen! So cute- I think her daddy will fall for it every time! She's asleep now, clutching her monkey and laying on her poodle.

She's so peaceful- I love to watch her sleep and breathe. I'm counting down the days until I'll get to snuggle her- I can't wait, it feels like forever (it's only been since Tuesday of last week)!

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Our Horoscope

I found our horoscope online, thought I'd share:

Leo Mom & Sagittarius Baby

Put you and your Sagittarius baby together, and what do you get? Instant party! This cheerful and active child will resonate to your fiery constitution, and you'll be inspired by baby's seemingly boundless energy. You two will be double-daring each other the moment you step into a Mommy & Me class. Before you get to that stage, you'll savor your baby's infancy. The Sagittarius sense of humor develops almost immediately, so you can hone your silly sense of bathroom humor during diaper changes -- or get your money's worth making funny faces in a photo booth. What could put a strain on this relationship is your trying to tie Sagittarius down. We know you can't get enough of your BFF baby, but it would be unnatural if Sagittarius didn't have a posse of friends and admirers. You'll also have to get used to sharing your child with preschool teachers and babysitters who feed your child's intellectual curiosity. Don't worry, -- you're still number one! And you'll stay that way if you balance your TLC with very long apron strings.

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Saturday, January 10, 2009

Toe Nibbling

I live, eat, breathe and sleep Grace. I find immense joy in nibbling on her toes and legs, kissing her fingers and brushing her hair. I have turned into one of THOSE mothers.... and I couldn't be happier! I think I'm getting too used to being here in the hospital, I honestly could not imagine what it would be like to have a child come directly home- it would freak me out! I find myself washing my hands 100 times per day, even when I'm leaving! Someone (usually my mom) will ask me why I'm washing my hands to go to the bathroom- it's just a force of habit now! I wash to leave, wash to come back, wash to touch her, wash to nap, etc., etc., etc.

We left the campus tonight for a brief while to get some groceries and toiletries- it was awful! All I thought about was all the germs out in the real world and how badly I wanted to be back with my little girl. When we got back to the Ronald McDonald House one of the kids kept me company to keep my mind off of Grace for the little while I would be away. Robert is an amazing kid- he's 11 years old, in 5th grade and has already had a kidney transplant! He's full of life and energy and is so very sweet. Robert told me all about his life, and after being here off and on since birth, he's finally going home. I cannot even imagine! Grace will have a similar experience and I hope that she too brightens someone's day. Grace will come to know all of the nurses, doctors, therapists and other families that have come to be like family to us. The people here are amazing- it's like walking into an episode of the Twilight Zone, so unreal how great everybody is! Grace is constantly spoiled- this litter girl has a million stuffed animals, and seems to gain them by the minute from friends, family, hospital staff, volunteers and donation! While the situation is certainly not one I would have chosen for our family, we've been so blessed to be able to have met all of these people and we truly have learned to appreciate every single moment of every single day. There are times when I get angry at the world about this- but then I think about the alternatives... this pain of going through this is actually a blessing- a blessing I've asked for the last 10 years! My Master's program is supposed to start on Monday and all I can say is YEAH RIGHT!!! The thought of adding that to my already full plate is downright hilarious! The most important thing I've learned- God has a plan for all of us and sometimes it's not exactly the way we planned or arranged- be ready for anything!!

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Friday, January 9, 2009

Visible Heart Beats

I had no idea I would be this exhausted- having someone else take care of your children is supposed to be more restful, right? Kidding... I know that I'm exhausted emotionally because of our roller-coaster ride that we endure on a daily, sometimes hourly basis. Grace had a good day today- but it does come down to a daily basis. At any given moment, Grace could take a turn for the worse- we have been told that we are not out of the woods, and it doesn't appear that we ever will be until she's had her next surgery. This surgery is a temporary fix- the shunt she'll grow out of, but it's so that she can grow big and strong before an even more intense surgery. To this I ask- more intense?!? Seriously??? I don't know how much more intense I can take. I have officially seen my daughter's heart beat, while looking through her chest. While some man may have her heart someday, they'll never see it like I did. :) Poor humor...

But, Grace is strong. The goal today was for her to burn off some of her fluids. The surgery makes her about 5x her size with swelling, mostly fluids from the surgery. Today's goal was 100 cc's within 24 hours and within 12 hours she had already hit 91! Unfortunately, that means she'll probably burn more than she should, more quickly than she should, and they'll have to add more fluids back to reach an even balance.

Grace is pretty high each time we see her- I would want to be too. They cut through and broke her sternum, separated her rib cage, pushed aside her lungs and heart and sewed a piece of plastic to an artery. When that wasn't big enough, they cut the artery, sewed stuff to it, then sewed more stuff to it and attached all of that to the heart. Then they pushed her ribs back together, wired her sternum and stitched her up. 12 hours later, they put a catheter up her groin (after poking her 5+ times) and shot dye into her heart. Then they ripped her stitches back out, unwired her sternum, separated the rib cage and put a stint in place to keep her chest open. Then they let her wake up- sounds like a scary torture film, right? But she had her eyes open today for a good portion of the day. She grips our fingers and responds to our voices- the lights are definitely on, but unfortunately Grace is only halfway home. The surgeon thinks he'll close her back up on Monday- and then hopefully, hopefully, hopefully she'll heal quickly and we can go home in the next 3 weeks or so.

I've picked Grace's official song- I find myself singing it to her multiple times throughout the day, and often times I'll sit down and listen to it just before dozing off for the night- it never fails to bring tears to my eyes. The song is Gracie, by Ben Folds. He apparently wrote the song for his daughter, Gracie.

I'm exhausted and nodding off for the night- I'll add more tomorrow. Each day is a journey, a sometimes painful yet beautiful adventure. Grace is such a gift- I love you Gracie girl! XOXO

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Thursday, January 8, 2009

McDonald's and Surgical Incision

We made it to this point- and that's saying a lot! It has been a truly difficult week- crazy days. On Monday night we decided to stay closer to the hospital to maximize our time with Grace- so we cashed in our airline miles for a night at the Embassy Suites: Paradise Valley/Scottsdale. The hotel was wonderful- very restful, probably the last good night's rest we've had since that point! We were offered a VERY discounted rate to stay there a few more nights because of our situation, but we were informed that we had been offered a sort of "grant" at the Ronald McDonald House next to the hospital. The Nick and Kelly Heart Foundation pays for all cardiac families to stay as long as needed, free of charge. I didn't expect the room to be very nice- but it far surpassed my expectations- it was nicer than some hotels!! I have taken for granted each time I walk into a McDonald's and see the change collector. I always think about throwing money in, and often throw in my change, but I never, ever thought it would be me who would use it and need it. Furthermore, the RMH told me that they get NOTHING from McDonald's outside of what comes from those boxes- isn't that a shame!!!???!!

Wednesday morning I woke up feeling good about the surgery- I was far more calm than I ever could have imagined- we all had really good vibes about the day. To my dad- I saw a coke truck- he'll understand that reference. We settled in for a long wait after kissing her all over and wait we did. They wheeled her away at 8 am and we got a call around 10 am letting us know the prep was completed and the operation had begun. About 1:30-ish Felix and I started to get anxious so we walked into the area where her post-op would take place. Our nurse immediately came over and explained that there had been some complications- and they couldn't find us. I was shocked as I'd already gotten 2 phone calls from the OR, but I wasn't in the right frame of mind to question it. Apparently, the shunt was too large for her tiny arteries. Imagine the artery is the width of your pinky finger and you try to attach a shunt the size of your middle finger width- too much blood for a smaller area, a sort of bottleneck if you will. So- they had to start over. At 1 pm, they begun phase 2 of the operation. They cut away some of her artery to add a patch to it, which would increase it's width, making it easier to handle the amount of blood flow. The surgery was a success and she came out around 5 pm. After the surgery her oxygen saturation levels were still very low- but she was on a ventilator that was breathing for her. The docs messed with the settings all night. Around 10 pm she was pretty stable so Felix and I went back to the RMH and passed out. I woke up to check on her around 5 am, and was told that they changed her ventiltator because her sats were still low, but she was doing better. I went back to sleep and was woken up by the surgeon calling to inform us that Grace was fighting for her life- her sats were dangerously low and even after increasing/decreasing settings there was still no change. The doctor was worried that something had gone wrong with the operation and was calling to get our authorization for them to do a cardiac catheter so they could map the blood flow for any kinks, blockages or twists. We ok'd it and jammed to the hospital. We walked in on her getting wheeled away. She was put under anesthesia again and it would be several hours before we would know anything. Two hours later, the surgeon informed us that because of her tiny size they had a difficult time finding a vein large enough, so they hadn't been able to start just yet, but were expecting they would be starting and that we would be waiting a few more hours- pure TORTURE!!! The surgeon came back later with the results- it wasn't the surgery, and it wasn't her bloodflow. Somehow her lungs were compromised and the reason was unknown- it could be RSV, Pneumonia, Preemie lungs, etc. The doctor wanted to go in and open her chest back up and just see if doing that (allowing the lungs to get more movement- with the swelling and her closed they may be too tight) and see if that would work. Again, we were told it would be hours of waiting. Felix stayed in her room, by himself and I went back to the RMH to shower. As I was getting ready to come back to the hospital the staff stopped me to ask if the hospital social worker had gotten in touch with me. I panicked, thinking it was about Grace, but it was because they had a vacancy at the newer RMH on the hospital campus, eliminating the need to drive. I agreed to switch rooms, and went back to check-out and pack-up. While packing, Felix called me ecstatic- he had run into the surgeon on his way to the bathroom, of all places. The surgeon let him know that it worked and he'd be by to explain in a bit. HUGE sigh of relief! The doctor came back to tell Felix that he was somewhat shocked that it only was that simple, but obviously optimistically cautious. It would take a few more hours to be sure. Felix met us at our new room- AMAZING!! The room was beautiful- huge too! We are blessed with the RMH being in our lives. We met the doctor back in Grace's room and he gave us our first smile- that said volumes! She was doing amazing. We still aren't in the clear, but several doctors have given me a thumbs-up. The doctors had to leave her chest open (with plenty of sterile "plastic" over it) and we can see her heart beating- but she seems so much better and the whole mood of the staff has changed drastically. Another surgeon just walked in while I was typing and gave me two more thumbs-up! YEAH GRACIE!!! Stay tuned- more rollercoaster coming your way soon. God bless all of our friends and family- for your prayers, thoughts and support. We love you all!

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Monday, January 5, 2009

The Waiting is the Hardest Part

I am officially a nervous wreck! We met with the cardiac surgeon today, Dr. A.

Grace will have her surgery on Wednesday morning, probably around 7:30/8 am. The procedure itself takes 4-5 hours, but with prep (getting lines into her mini-arteries) could bump up the total time to roughly 8 full hours. That's 8 hours of torture- I'm already shaking, cold, scared and nervous- I don't even want to think about what state of mind I'll be in on Wednesday. The surgeon explain in detail what was going to happen, calling it the "mini" surgery, as the next surgery (4-6 months from now) will be actually open heart, where they'll cut into her heart. This surgery they'll open her chest and sew in a plastic-type tube on the right side of her heart and close the artery that typically closes on it's own after birth. The surgeon seems positive- there is a 94% survival rate. Grace has some things going in her benefit, but also a few strikes against her. The doctor, being a doctor, of course prepped us for the worst. Sometimes babies will get very ill during the course of the surgery or recovery (germs, colds, flus, etc.) and can be fatal for them. Sometimes the heart beating is too much for them- their tiny hearts work 2-3x harder than the average heart, with a low pressure system, as the synthetic artery is tiny, but controlled. Grace has super tiny arteries and isn't as big weight-wise as they had hoped, but the surgeon also stated that she's older (over 1 month now) and has fought through some tough times- she's a fighter. I'm nervous about this, but hopeful. I find myself wanting a guarantee, and dreading each surgery thinking about the what-if's, but every parent says goodbye to their child, or puts their child to sleep each night never knowing what could happen- life is relative. This surgery is a step in the right direction- a beginning of the end, per se. Grace will probably be home 3-4 weeks post-surgery, and I'll be over the moon. I just cannot wait to do normal baby stuff with her!! Grace has been my little miracle- but she's also been my lesson in life. I've spent way too many hours and days worrying about what could happen, being a hypochondriac about myself and Felix- such stupid things, and now I've been tested with faith. I have faith- and I have a lot more faith than ever before, but this definitely tests you, your marriage, your friendships, your whole being. God has a plan, I just may not always agree or support His decisions, but I have to understand and appreciate the bigger picture. God blessed me with Grace, but also has given me a patience challenge- I have no choice but to enjoy each moment of each day that I have with my baby. Grace is tough- she'll be fine. I'm not only convincing you all, but also myself! Say lots of prayers, think good thoughts and I'll update you all as soon as possible. Grace will probably be "under" for a few days, just to keep her calm and comfortable.

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Friday, January 2, 2009

Shunt Info

I just got the call that she's going in for her CT scan now! Here's some info about the surgery that will take place: (this will be the 1st surgery- a temporary fix until the corrective surgery can be performed)

The Blalock-Taussig shunt is a surgical procedure to give palliation to cyanotic heart defects which are common causes of blue baby syndrome. In modern surgery, this procedure is temporarily used to direct blood flow to the lungs and relieve cyanosis while the infant is waiting for corrective surgery.

One branch of the subclavian artery or carotid artery is separated and connected with the pulmonary artery. The lung receives more blood with low oxygenation from the body. The first area of application was tetralogy of Fallot.

The procedure is no longer in use in its original form. Now a length of artificial tubing, 3 to 4 millimeters in diameter, is sewn between either the subclavian or the carotid artery and the corresponding side branch of the pulmonary artery, thus obviating the need to cut off blood supply and making it easier to regulate the blood flow to the lungs. Some centers now use a shunt directly from the right ventricle to the pulmonary artery, a Sano shunt. This is done to avoid the reduced diastolic blood flow in the coronary circulation associated with the Blalock-Taussig shunt.

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