Who Are We?

Found this on a Congenital Heart Defect website.... Great read from Grace's perspective!

So who are we?

We’re 1 out of every 120 people... there’s a new one of us every 14 minutes. We are both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and Heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we recovered.

We aren’t related by blood but we are a family. We call ourselves the Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We know that most of us shouldn’t even be here and so we live every moment as if it is our last. We’ve celebrated our victories and we’ve mourned our losses. Our heroes include a Flying Tomato, a golfer, and a former movie star, because we are them and they are us. Our parents are Heart Dads and Heart Moms, and we consider those titles as Badges of Honor. They deserve it; they were the first ones to discover that a heart defect doesn’t just break one heart... it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

Hell

Hell.... that's how I describe the past 30+ hours.... Hell.

I never, ever again wish to relive the experience. Hopefully, we won't have to- obviously there will be more surgeries, but nothing quite as bad as this one (hopefully!!).

Yesterday started out fairly normal. We had a VERY hungry and cranky child who was waiting for surgery. As surgery time came closer and closer, she became crankier and crankier- requiring more and more sedative to keep her calm.

The surgeon had come in the day before to meet with us and explain the "ideal" procedure and the potential risks. Even still, nothing prepared us for what was to come. Dr. Pearl explained that he would be opening the chest, dissecting away any residual scar tissue, and would then be able to determine what size conduit he would be able to fit into her chest. Essentially, the conduit is an animal-type artery that connects from her heart and branches to connect to her pulmonary arteries. He was hoping to be able to get a 16 mm conduit, but would settle for a 14 or 15, if necessary. Dr. Pearl explained that he would place a patch over the hole in her heart, working from the hole where the conduit would sit. After the patch, he'd attach the conduit, take her off bypass, and send her to recovery. Simple enough, right? Of course, there were risks- the patch might have to be punctured to even out the pressures, which is normal, and it would be possible that her electric conduction of her heart could be off after surgery, as the patch sits right on the conductor tissue, meaning she would require a pacemaker. This would be very, very rare. Even more rare, she could eventually require a heart transplant. Dr. Pearl was almost positive he'd be leaving her chest open (open sternum) to wait out the swelling. We agreed, asked a million and one questions, and sighed with relief as we prepped for the next day @ 12:30 pm.

My dad flew in from Wisconsin. Thank Goodness he was able to spend some quality "normal" time with Grace before her procedure. The two of them are just precious together- and both STUBBORN!

We all spent some time with Grace before she went for surgery. We got her to laugh, smile and even cry with all of us. We were all very emotional. I love this face! Grace is pouting, while my dad is grinning ear-to-ear. Priceless!

Approximately 1 hour before surgery, the anesthesiologist came in to meet with us. Grace has had a ton of anesthesia procedures, so I expected to recognize or even know the doctor, but no... nothing. I had never seen this guy before. Not that it means something terrible, it just bumped my anxiety level a little higher. We also met with the nurse who promised to meet with us every 1-1.5 hours. We were nervous, but eerily calm. We walked her down the hallway to the OR and said our Godspeeds.

Then it was time to wait.... At 3:30 (2 hours after surgery was to begin) we still hadn't heard anything. Angie, the RN, had promised to update as before surgery started, before bypass started, when bypass ended, etc. Nothing.... I thought, okay, no news is good news.... and then my curiosity got the better part of me. I went into the NICU to see if any of my connections could get a status update for me. Luckily, they could. Surgery had begun, bypass had begun, and she was stable. Whew! Huge sigh of relief. We didn't hear anything again until a cardiologist came out to check on us. We advised him that we hadn't heard ANYTHING other than from the NICU and he went in to the OR to get us some info. Apparently, after dissecting her, her pulmonary arteries were too tiny to be able to handle the pressures of blood flow with a conduit, and Dr. Pearl was considering just replacing her shunt with another bigger shunt, and waiting 6 months-1 year to surgically do the full repair. My heart sunk into my chest. I tried so hard to not be dissapointed- obviously, I wanted what was best and safest for Grace, but I also wanted to have a "real" life with her. Felix and I had talked about trips to Sedona, flying in an airplane with her, seeing our families, etc. None of that would be possible with just the shunt. It was like all this drama for nothing, well, something, because her old shunt had failed. They told us that if we would have caught this sooner (not "we" but we as a team) her shunt wouldn't have failed so miserably, and her collateral arteries wouldn't have grown, thus competing for blood supply with the pulmonary arteries, causing them to have stenosis, or narrowing. The worst part, Grace wouldn't have needed bypass for just a shunt procedure, and she had already been on bypass for 2+ hours at this point. Another 2 hours went by and the same cardiologist came by to check on us. Again, we advised that he was the only person truly keeping us up to date. He went back into the OR a 2nd time to get the status. Dr. Pearl had went forward with the full repair- and only after he finished would we know if it was the right decision, or if he'd have to tear it all down again and start over. We waited, and waited, and waited. Finally, a charge nurse came out to let us know that they had been able to put in a 12mm conduit (4mm smaller than they had hoped for), but the pressures on one side of the heart were too great for her little body to handle. They had attempted to take her off bypass, but had no luck. They decided to punch a hole in the patch where the closure was, allowing the blue and red blood to mix, thus creating an equal pressure in both ventricles until her body grew used to the new processes. They were hoping this would work, and if not, they would be tearing down the conduit and replacing the bigger shunt, another 4+ hour procedure. Literally, I was dying waiting for these updates. At 10:30pm (9 hours after surgery began) we were told the surgery seemed to be a success. They were able to keep the conduit with the hold in the patch. They would be doing OR EKHO's and EKG's to make sure everything looked good and then taking her off bypass, and bringing her to recovery with an open sternum.

The rest is all sort of a blur, as I was massively anxious, tired, sleep deprived, emotional, etc. I literally felt like a MAC truck had run me over, and over, and over, and over again. Grace was off bypass succesfully, doing awesome, and Dr. Pearl was able to close her sternum, but was experiencing more bleeding than he was comfortable with. He gave her plasma and platelets until he hit her max, and then gave her something called "Factor 7"- I guess it's a last ditch resort to stop bleeding... some crazy miracle drug that is very expensive, and I'm told my insurance company will probably be sending me hate mail.... There would be no telling if the Factor 7 worked until 6-8 hours post surgery, and if it had not stopped, it was possible that another operation would be performed to control bleeding.

It's now 12:30 pm on Thursday (the day after surgery) and approximately 12 hours post surgery. The bleeding is good, Grace is good, and all is well for the road to recovery.

Grace is ventilated, and will be for another day or two, but she's healthy. She keeps kicking, doing aerobic moves in bed, which isn't good- but shows she is feisty, and ready to be done with this. Unfortunately, the more she is active, the more CO2 and Lactic Acid she accumulates, meaning the longer she'll have to be ventilated. Luckily, after trying seriously 6 sedatives in tandem, they've found the combination to calm her. Every now and then she still twitches or kicks, but her blood gas results are getting better.

The doctor and surgical team just came in while I was typing this last sentence. Changes again, she's doing well, so they're decreasing her ventilator support while increasing her sedatives. Essentially, they'll give her less help breathing, but more sedation to keep her from fighting it, creating more buildup of CO2 and lactic acid.

Why do I know these terms? I scare myself some times.... I'm a heart mom, though. Through and through. I've undergone baptism by fire, I suppose. It's funny, people comment about how they can't imagine going through something like this with their little one and that they wish I would be able to have a healthy child experience, either with Grace or my next. However, to me, this is ALL I know- I wouldn't know what to do if I had to bottlefeed every few hours, or what to do if I didn't have a huge medical team that will answer my every question, thought, and even let me propose potential treatment ideas. This IS my life, and I'm really okay with it. To be frank, it really does frighten me more to think of what it would be like to parent a "normal" child...

Well, I'm for a nap- I've been up WAY too long with WAY too little sleep...

Surgery Waiting Period

Grace has been doing so well these last few nights, really holding her own. After all the trauma and drama of the first few nights, I really expected a true emergency surgery situation. However, Grace is now down to 2 liters of oxygen, from 3, and is satting in the high 80's continuously. She's still on a strong sedative drip, but it seems to work well.

We were told surgery would probably be Wednesday, but no one would give us a clear answer. Everyone kept saying that we would have to wait for the cardiac conference Monday morning to find out exactly... so we waited, and waited, and waited and waited, and waited.... until 5 pm and I could take it no more. I walked up to the surgeon and begged him to give me a day or time, to which he answered nonchalantly that it would be Wed. afternoon most likely. He acted as if we should have known this all along... UGH! So, we're thinking Wednesday, and if it changes, I don't care anymore. I cannot spend my sanity stressing over this!

My father is flying in to be here with me tomorrow evening. I'm looking forward to a really big hug, and a reassuring voice from him. I told my mom tonight that they were obviously both my parents, because when I'm stressed out to the max, I need both of their perspectives, both of their voices, both of their hugs- they make me feel safe, and home, which at this moment, I really need!

I've had a hard time with this hospital stay, and I feel bad, because I'm such a people-pleaser. So many friends have asked if they could be here to support us during the surgery, or even come visit before or after, but we've been turning everyone away. This breaks my heart!! It's just so stressful and busy for us, we're just trying to stay low-key, and keep it quiet. Plus, when others visit, we feel the need to entertain, which we know is absolutely not the case, but we feel guilty if we're ignoring our friends.... such a conundrum! After the surgery will be bad too, as we're having to stay away from those who have kids, especially those in daycare. Any sickness, especially as we drift into RSV season, is life-threatening post heart surgery. So, we begin our months as loners again, until Grace shows us she's ready...

I have spent every night on the hospital couch- so very uncomfortable! Two nights ago we were able to secure a room @ the Ronald McDonald house off campus, but since it's a good 10 minutes away, I chose to stay with Grace. Last night, I was almost going to switch with Felix, but since we're in such a bad, scary neighborhood, I thought it better to let Felix go there. Today, we were SO LUCKY! We got transferred to the campus house, and were blessed to get an apartment!! This means we can eat and cook in our room- yee-haw! That rocks, seriously. I cannot tell you how awkward it is to come back to a house full of strangers, sit down with them, especially after a difficult day, and eat dinner. In the regular rooms, food and drink are not allowed- which when you're on the 4th floor, is pretty awful.

I'm really looking forward to a good night's sleep tonight- I really need it.

So... care packages! So many of you have asked what we want/need.... We don't need them all at the same time, in fact, we would benefit greatly from them continuing to come after we've come home.

Ideas:
Dinner (Once home)
Movie Rentals (Once home)
Lending us TV show DVD's or Movies
Snacks
Drinks
Meal Ingredients
Magazines
Crosswords, Sudoku, etc.
Gum
A friendly text message
A sweet note
Be creative- we love even just hearing from you!

On the day of the surgery, we're asking for patience from friends and family. It's going to be a LONG procedure (4-6 hours) and it will only stress us out more to get text messages and phone calls asking for updates. We will update everyone as soon as we can, and as soon as we know. Remember, we're waiting to hear too!

Keep praying, if you're religious. Keep thinking positive thoughts and sending them our way. Light a candle for Grace. Hope for a speedy recovery.

I will update more as I know, but I really want to thank everyone for the continued outpouring of support, love and prayers.

Strength- Come in a Bottle?

It's only 9:30am, but it's been one hell of a morning. Last night, Grace continued to have a hard time- we weren't sure if it was because she was coming out of sedation from the cardiac catheter, or if she was ultra dried out from the oxygen, or just over tired, but she would not stop rubbing and itching her face while screaming. At about 4:30am, I told Felix that if I didn't sleep, I didn't think I could go on- I had maybe gotten 2-3 hours of sleep per night since Wednesday. (Felix got home about 8pm yesterday evening) We were sharing a small couch in the hospital room, making the best of awful living accomodations until our room at the Ronald McDonald House was ready this morning.

I don't remember anything beyond that (blissful sleep!!!), but I woke up to many people in her room around 7 am. We were informed that Grace had been de-satting (basically not getting above 75% oxygen) since about 5 am, and was becoming more irritable. They were planning to sedate her to keep her calm, stopping her feeds, and moving us into a surgery observation room- and the kicker, be prepared for surgery to happen immediately if necessary. We frantically called family asking if they wanted or needed to be here, called airlines, threw our clothes into suitcases, cried and carried on.

Getting to her new room, the surgeon came by to talk with us. He would like to put in the largest conduit possible, so that Grace can avoid the next surgery for as long as possible, giving her room to grow. Unfortunately, since Grace's condition is somewhat rare, the hospital doesn't keep a supply of conduits, so we are having to wait on "Grace's parts".... she's like a foreign auto, I suppose? Surgery, if possible, will be dictated by that date, but is looking more and more like Wednesday of this coming week. The plan is to continue to sedate her in hopes of keeping her calm, but if that doesn't work well enough, they'll ventilate her and basically put her in a pseudo-coma, until surgery arrives. They really prefer not to do that... so, if it gets bad, they may bump another kiddo from the schedule and fit us in.... So, essentially surgery is between now and Wednesday, and so we wait....

It's tough going through all of this, not only for us, but our family & friends too. So many of you want to be here for us, and I love each and every one of you for it, but it's extremely difficult. They only let family into the recovery room (which becomes our room after), and with the prospect of Felix's mom or dad coming out, and my dad coming out, that leaves little room, as my mom and Pam are already here. I love that everyone wants to be here, and hug me (I need them so badly!) but I refuse to leave her.... So, please pray for us, love us, and even send us virtual hugs. Visiting with us at the hospital is probably a non-option for the next week or so, but feel free to call, email, text, and even drop by care packages :)

I have a hard time explaining how I feel about this next procedure. It's truly bittersweet. Any parent hates to see their child in pain, so the before and after of surgery is hell.... but knowing there is no viable option but surgery, and knowing the opportunities that allow us to be a "real" family after surgery, help get me through all of this. This surgery is so much different for me than the last one- I don't seem as frazzled, but really, inside, I'm more afraid. I loved her before, but not like now. I try to explain to people, and maybe it's different when you adopt- but I had to get to know my baby, and she had to get to know me. Now, she knows my voice, my touch, and I know her likes and dislikes, how she likes to be touched, dressed, etc. During the last surgery, they had to teach me how to be with her- what touches she would like, etc. and this time around I get to tell them... It's a nice role-reversal, but it also means this surgery means so much more. I hope I'm not making it sound like I would have been okay with complications on the last surgery, because that's not the case- I loved her and needed her probably as much as she needed me, but now, now she's my world. She is my heart that lives outside of my body- she's the reason I get up each day, I smile, I laugh, the reason Felix and I are exhausted, but still manage to look at each other and smile and the reason we know that we're blessed, not burdened, by our little miracle. She teaches us- and we're honored to be able to parent her.

Give us strength.... I may need it.

Two For One Surgery Month @ PCH

I'm absolutely terrible at upkeeping this site- but I get asked about it so often, I will commit (again) to being better at this. What a few months it has been! Grace is a wiggle worm extraodinaire! She is either upside down, sideways, flipped over or half hanging out of her crib each night. Here she is warding off the paparazzi. ;)

Since Grace's original diagnosis and surgery, we have been told that Grace would be developmentally delayed. After visiting the neuro-developmental specialist (I think I blogged about this a while back??) we wer

e told she may never hold down a job, low IQ, etc. etc. We were referred to a neurosurgeon regarding her lack of head growth. Great news!! Her head grew like 4 cm from the one visit to the next and the brain MRI shows that everything is in working order and doing well. In fact, the surgeon actually informed me that on Grace's 5th birthday, I was to take her back to the original doctor and let her throw spit-balls at her! HA!! Take that, fancy pants doctor. :)

4th of July was a wonderful day spent with good friends and family. We celebrated Auntie Blair's 29th birthday with swimming, tons of food and lots to drink!

We headed towards the stadium

later that day for fireworks. Grace was in awe!

Fast forward to now- she's so smart!! She's talking (not actual words, although we think we hear "hi" every now and then...), kicking, laughing, smiling, playing, engaging, eating applesauce from a spoon- what a difference! She's been absolutely amazing, and if it weren't for the NG tube that has/had been taped to her face, no one would be able to tell there was ever anything wrong with her!

Grace still won't take a bottle- nothing that even resembles a bottle, pacifier or breast- she wants NOTHING to do with anything of the sort. She will, however, take food by spoon in very small amounts. I had asked the doctor if there was a way to thicken her formula so that we could "solely" spoon feed her, but there isn't a way to get enough calories into each feeding by just food alone, we would have to use formula. After much debate, research, consults with various doctors and other professionals, including watching Grace's bud go through a G tube surgery, we decided to go for it. We made the appointment with the surgeon.... and then we cancelled it.

I was so worried- was I doing the right thing by having her undergo another surgery? What if they had to intubate (put a ventilator down her throat)? Would I be lessening her viability for the next heart surgery? So, I did more research, and more questioning, and more praying and again, we decided to go for it. We made the appointment with the surgeon.... and had surgery the next morning.

What a rough surgery!! She was in so much pain, and anguish. She cried, and cried and cried and cried. They eventually had to morphine her and sedate her and ibuprophen her! Virgil, her Navajo spirit guide (I'll go on to this in a second), came for a quick visit, did some healing prayers for all of us, and within 2 hours, she was a different child!

The hospital kept us overnight for monitoring an extra night because of her special heart, but released us and home we went.

**I will get back to Virgil in a moment, see end of blog**

Once home, Grace was needing meds continually to avoid pain. We found a whitish discharge, and noticed the surgical site was red and oozy. After speaking with the surgeon over several days, we went into the office to check for any further complications. The surgeon reccomended an upper GI to check for any problems with the procedure, but all was well. The surgeon couldn't explain Grace's irratibility and other issues, and advised that we should admit to the ER if things continued to get worse for further monitoring.

July 22nd, our adoption day, was finally here! We all dressed in pink, friends and family included.

Even the judge commented on how color coordinated we all were. The judge told Gracie that she had picked a great family, and the ceremony was over.

We all went to Mimi's Cafe for a celebratory breakfast/brunch and I noticed that Grace was a bit fussier than usual, but chalked it up to over-stimulation. A few hours later, the discharge from her G Tube site changed from white to yellow to green, and I finally called again and pre-arranged an ER visit. When we got to the ER, we noticed she was a bit blue. It hadn't happened before, and we didn't know why, so they admitted us to the cardiac floor to monitor both

her heart and G Tube. All was well with her G tube, but her breathing and blueness continued to get worse and worse. We went from being on no oxygen, to needing .2 liter, .5 liters, 1 liter and finally up to 15 liters at one point, then back down to needing a constant 3 liters... not normal at all!

I questioned her heart and the cardiac physician on call refused to leave home to re-evaluate. Being the pushy bitch that I am when I need to be, I called other cardiologists that I knew, and finally got some answers and an admit to the ICU. Once in the ICU she stabilized, with the intent of getting answers first thing in the morning.

That brings us to today- Grace had a cardiac catheterization (basically a camera is inserted into her heart/lungs to take photos) and they were able to see her shunt and heart function like never before. She was under general anesthesia for 3+ hours, worrying me like crazy, but she did great. Turns out, her shunt is way past overdue- she should have required surgery 3-4 months ago!! However, her body, being a fighter, "grew" larger superficial arteries to supply extra blood, thus oxygenation, to the lungs, keeping her sats up and her color pink. If we hadn't done the actual cath procedure, and opted instead for a CT scan or EKHO, we would never have known, and possibly have been sent home on oxygen.

Instead, Grace will be having her 2nd surgery, AKA "The Big One!" Grace will be open heart, meaning they'll actually cut into her heart and place her on bypass, having a machine do the work of "living" for her while they operate. The actual procedure is only 3-4 hours, but feels like days long when you're living it! Grace will have her surgery possibly within the next 3-4 days, but within the next 10 days. We'll be moving into the Ronald McDonald Home again for the next month or so, until she's recovered and ready to go home. This surgery they'll be building a "conduit" to connect her pulmonary artery and heart, and then also closing the hole in her heart. Recovery should take 10-20 days.

Good news- she'll be able to travel to higher elevations soon- this means we can visit friends and family, visit Sedona, visit Flagstaff, etc. We can live like normal for hopefully a few years!!

I'm really scared about the procedure, but it's a neccesary evil, so I'll deal with it- but not without fear and prayer.

Onto Virgil.... You probably remember me telling you about the Native American ceremonies that we have participated in, and the other Native American things.... Well, 2 coincidences have appeared regarding Virgil now- first, when we first met him @ his house, he blessed Grace and us, while she was on oxygen. Within the week we went from being on oxygen indefinitely to being completely off oxygen. Then, a few weeks ago, similar experience... she was a train wreck, Virgil came and blessed her, and within 2 hours- normal kiddo! Now, the whole "growing" of collateral arteries to keep her healthy while she grew stronger and healthier for her next heart surgery.

I will update as we go on- but thank you all for the prayers, support, kind words and love. So many of you comment that I am an inspiration to you, and that shocks me, but I really couldn't be as strong as I am now, without you all!!