Worry Does Not Guard the Sacred Future...

We went to see Dr Lemler this morning.  We've seen him a couple of times since we brought her home, when we've seen the surgery team. Officially, those times before today were to see the surgery team only, but he was able to pop in each time and put his eyes on her. Today's visit was scheduled with him, so he was able to spend a little longer with us. 

So he walked in the room and said, "Rumor has it...that you've just had surgery...but looking at you I don't really know if I believe that."  In a nutshell, she is doing awesome. We've been tweaking little things in order to balance her fluid and electrolyte status, while trying to make sure no pleural effusions come back. Remember, that's why she had the chest tubes after surgery. Sometimes after the Fontan, those will come back after the chest tubes have been removed. That's why they keep her on high doses of diuretics (to help her pee off the fluid). The problem is, with being on those kinds of meds, it throws off her electrolytes so we've been chasing those as well. 

Today her chest X-ray looked perfect (no effusions), her electrolytes were all in good range again, and her EKG was good (no weird arrhythmia). Those are all good things that we've been dealing with since coming home. Now, the thing they looked at today was her heart rate which was elevated some. This can be from being on too much diuretic and being a little on the "dry side"...  He went back and forth over whether to stop one of the diuretics or "pee meds", (which is what four year olds call them.)  He decided to let us take her pulse at home this evening and call him with it. If it's still high away from the hospital he may just stop one of the meds. We will see...

All in all, she continues to amaze everyone...including me. It's hard to believe we are on this side of this surgery.  I know I've said that before, but I still can't wrap my head around it. I'm still having a hard time relaxing. I've been trying to allow myself to just breathe and openly accept this gift we've been given. It is such a gift. She is such a gift. I am so grateful. 

I've read something lately that I love and I want to share with you all.  I share it because I think we all need to hear it, and put it into practice.  I also share it because I need to to read it again, say it out loud to myself, type it in this blog, and do it.  I need to adopt this way of thinking...I imagine I will have to work on this for the rest of my life. 

This is from a blog I just read yesterday...

"Worry is a cornered dog, growling and hair bristled, trying to fend reality off, snarling and putting all its energy towards the fight that is coming.

In Brennan Manning’s new devotional, Dear Abba, he writes about surrender, which is the opposite of worry.

“The emotional state of surrender” writes Harry Tiebout, “is a state in which there is a persisting capacity to accept reality. It is a state that is really positive and creative.” When the Christian surrenders to the Spirit on the unconscious level, there is no residual battle, and relaxation ensues with freedom from strain and conflict. Submission, on the other hand, is halfhearted acceptance. It is described by such words as resignation, compliance, acknowledgement, concession, and so forth. There remains a feeling of reservation, a tug in the direction of non-acceptance. Surrender produces wholehearted acceptance.

My wife Mary has a mantra. Sometimes mantras are clever but soulless, and so they dissipate like morning fog. But sometimes they are life preservers. Mary’s mantras are always life preservers.

“Worry does not guard the sacred future,” she says.

“Who are you?” I say back.

She means that there is a sacred future, one that God is inviting us to both join and co-create, and it’s filled with possibilities, uncertainties, what ifs, joy, and pain. And we cannot guard that sacred future. We can only walk into it, whatever it is, choosing to believe that God is good (another mantra that can be a life preserver).

She means that worry doesn’t help the sacred future to come more quickly, or without pain.

She means that in order to walk into the sacred future, we must accept reality, no matter what reality is, and surrender is required.

“Be it unto me, just as you said.”

Another Mary said those words, and when she said them, they were words of surrender. I’m sure there was some worry along the way. Surrender doesn’t mean there are no more highs and lows. But whatever worry she did have, she didn’t let it turn her into a snarling dog, bracing for a fight.

Surrender walks into the sacred future, hand-in-hand with One who knows how to calm the snarling dog, and lead it into freedom.

And you get to choose how you will live, worry or surrender."

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I love the mantra "Worry does not guard the sacred future"... I love it. I want to live like this.  And I will spend the rest of my life trying to. In the meantime, though, I will choose to accept His gift with my whole heart. Thank you....Thank you so much God. :-)

This is a picture of Lia next to the plaque that hangs on the wall in the CMC heart clinic.  Lia was the first baby we did the "Babycam" or the "Virtual Crib" project on at Baylor. I was able to see Lia on a webcam after she was transferred to CMC and I was still recovering at Baylor.   We are now able to do that for every baby born at Baylor with serious heart defects requiring immediate transfer to Children's. Obviously, this program is very near and dear to my heart. She's come a long way since then...

Just a cute pic of Lia and her daddy waiting to see our friends in the CMC Heart Center today...

Better and Better Every Day...

Some of you have been requesting an update...sorry, I've been busy trying to get projects done around here. I'm not used to having any extended days off, so I'm taking advantage of this time. Now that Lia's feeling better, it's on. Project "get the Stone house organized while I'm off work" has begun with a vengeance. 

It looks like Lia has turned the corner. She's not 100%...but we are getting there. Her appetite is back and for now, seems to be eating better than ever. She's currently working on her third piece of pizza for lunch. She has started playing some, instead of just watching TV from the alternating stations of the couch and our bed. She and I have been on a few walks, (with me pushing her in the stroller), and that seems to be good for everyone. She gets fresh air, and I walk the hills in the neighborhood. Win-win...

It's nice for Corey and I to be able to tag-team on taking care of her, especially at night. Its really still taking both of us to answer her every beckon call and demand... She's up several times each night to go to the bathroom.  That tells us her diuretics are working. We've stopped trying to hide her meds in her food...she's too smart for that. She prefers for us to just dissolve the Lasix and Diuril in a couple ounces of water and she takes it down with a straw. We made a deal with her not to hide any meds in any food from now on. That agreement is in exchange for her to be able to eat any food she wants, knowing there is nothing hidden in it. She's done really well with that. She's not needed any Tylenol for a day and a half or so...so we've stopped forcing that down her. She's done great as far as that's concerned. 

The combination of her feeling better overall and not needing as much medication, along with more energy from eating has turned her around. Again...we are obviously still being extremely careful with her, but so far she's better. She woke up yesterday morning telling me she wanted to wear her pink dress to church, and was disappointed when we told her she had to stay home another week. It won't be long, though...and she will be glad. 

Here are some pics from today so you all can get your eyes on her. She looks good...and I haven't stopped thanking Him for protecting her through this. It's hard to believe we are on this side of the. very thing that has sat on our shoulders for so many years. Just like Dr Lemler said the other day..."See? All that worry for nothing..."  Yeah, easy for him to say. He is also so relieved and happy that she's done well.  We all are...

Yep, she's washing dishes...I told you we were getting this house in order. ;-)

Taking down pizza for lunch. Here's hoping she can gain back quickly the weight she lost....and I can quickly lose the weight I've gained. #thanksforallthefoodeveryone! 

All In Due Time...

We got to bring our girl home yesterday. She was having a few issues still, but nothing they felt like  couldn't be handled from the comfort of our own house just as well as from the hospital. For instance, she had started throwing up, really for no apparent reason. Before, it had been after we had forced yet another medication down into her tiny four year old tummy. She has pain meds, her heart meds, her "trying to get her to poop" meds, and her diuretics. That's a lot to force down a kid who feels bad, has yet to poop so everything's getting backed up, and who is tiny to begin with. So Lia was getting tired of the meds. And the hospital. And us. Who can blame her?

I told the cardiology team that I thought she would do better at home, and they agreed. I really have to give the docs and nurse practitioners that at Children's...they listen to the parents. They said they trusted us to take good care of her, make sure she stayed hydrated, and get her meds down her. They told us again how awesome she was doing, and they sent us home. Oh, how happy we were.  

There's really nothing better than coming home after a stay in the hospital. Home is home. We are all together, we are comfortable, and we can watch the Rangers from our pick of several different TVs.  Lia's not a big Rangers fan, and much prefers Disney Jr. She's the sick one, so she got pick in the hospital. Disney Jr was and still is getting old. There's some weird cartoon she likes where the rabbits talk, but don't have mouths...but I guess that's really off subject here. 

Home is best...especially coming home to a house that mom's been cleaning and doing laundry to get ready for us. Corey's mom brought over one of her famous, 10 course, brisket meals that we had for dinner.  Yummo...that's what I call comfort food. The boys were so glad to see us home when they got home from school.  Home is definitely best. 

Even though home is best, it hasn't been what I would call an easy transition. I know it seems like we've rocked through this whole thing flawlessly (and again, by all Fontan standards, we probably have)...it has been hard. Lia isn't comfortable. She had pretty much gone on complete strike as far as taking any pain meds, even Motrin and Tylenol. She is so incredibly stoic. She tells us she isn't hurting, so she doesn't have to take those meds. So for a while, we chose our battles and opted out of forcing those down her in an attempt to decrease everything she was having to take. She would get so worked up and anxious about taking any of her meds, she would end up throwing anything up we got down her. It just didn't seem worth it. I think in the past 24 hours, Corey and I have learned a few things. One thing is that even though she has the most determined, stoic look on her face, she IS still hurting. She still DOES need the pain meds, and she doesn't do well without them.  The look on her face, in her eyes...no child should ever have to look so grown up. Really, that look is more grown up than many real grownups I know.  It breaks a parent's heart to see it. She's just a little girl, a brave, courageous, determined, tough as nails little girl, and I won't have it. I won't. She's now getting her pain meds regularly. She doesn't like it, and it may take us 30 minutes to get the entire thing down her without her puking it right back up...but she's taking them. I think she feels better for it.  She hasn't thrown up once today...that throwing up during the night was about her hurting. If we can control anything...it will be that. We won't let her get uncomfortable again.  

She pretty much just lays around. I know that's normal...she should feel terrible. And she does. It's so hard to see. I know this wont last that long, at least that's what I hope... I'm ready for my baby girl's personality and spunk to return. This is really hard. Really hard. I just keep praying that she will return to us a little more every day. I keep thanking God for how well she's done. I keep asking Him for more patience for myself. I keep asking Him for guidance and strength to continue pushing through each hour. I know he's right here with us...most of those small prayers are being answered daily. By the way...she has pooped by now, several times. That was just one of those little prayers. ;-)

It's hard to tell how Lia really feels by looking at any of these pics I snap of her. She's fooling you with her posing talents...but here's one I took today. 

Here's what she's doing now...after Tylenol. :-)

We also got away for a few hours today for the boys' Awards Ceremonies at school. Here are some pics of them, their teachers, and their friends. They both won lots of awards and were recognized for accomplishments, but Jace won the Principals Award which is a pretty big deal. We are proud of both of them. They are pumped about being off for the summer. Here are the pics...

Colby and his teacher.  She was awesome this year. She sent home not one, but two bags of snack foods for the boys on the days of Lia's heart cath and surgery. 

Jace and his funny, adorable, very sweet teacher. She has her entire family praying for Jace's little sis. 

Colby and his friend Cade. We love this kid and his family. We are so blessed they are in our lives. 

Jace and his buddies from his second grade class...all great kiddos that make Jace smile. 

So there ya go...that's what's happening in our world these last few days. Thanks for the continued prayers. Keep em coming... :-)

Getting close...

So much can happen in 6 days. It's been 6 days since Lia's surgery. 6 very long, sometimes very challenging days. But we are blessed. We know we have been covered in prayer...well, now for over 5 years. We can feel it. We feel it in every difficult moment, and we feel it in every single victory.  We know we have definitely had many more victories than challenges, but we are ready to get home. I didn't update the blog yesterday, but I'll give you guys a short list of our challenges and our victories... That way you can see how far we've come.  It's mind blowing to recall it all, and I think you'll be impressed. 

Challenges:

Open Heart surgery.  This includes anesthesia, precise line placement, time on heart bypass, sewing in the 22 mm graft from her inferior vena cave to her pulmonary artery, controlling the bleeding, and sewing her up. 

Chest Tubes. This is a big deal with any heart surgery, it seems even more significant with a four year old and this particular surgery. After the Fontan, the kids seem to drain a long time from the chest tubes as their bodies adjust to their new circulation and their lungs and thoracic cavity recover from the inflammatory process of the surgery itself. As I mentioned before, chest tubes hurt. Our sparkly eyed, sassy, never-stops-talking, Lia was nowhere to be found while those were in. 

Pain Control. We expected some of this. She complained of back pain and side pain the most, but most of that is thought to be referred pain from CT's. 

Oral Medication. This has been a biggie. Lia has had a really difficult time taking some of her oral medication. She's always been a great medication taker, and is still taking her regular meds she takes every day wonderfully (big blessing). She is struggling to take Motrin, which is extremely important. It helps her pain control, but also helps to keep the pleural effusions (fluid outside of her lung) in check. Without the Motrin, she doesn't feel comfortable. I'd she doesn't feel good, she doesn't get up and walk. If she doesn't get up and walk, she doesn't get stronger, doesn't move her food through, and doesn't move the fluid out of her lungs. We have changed her diuretics to pill form, and are giving her that in food. She has to have the diuretics for a while to ensure those pleural effusions decrease. Somehow Corey has managed to turn things around with the Motrin. He's had some success getting her to take it. I just pray she keeps that up because I'm on tonight while he goes home with the boys. He's been named "The Medicine Whisperer". I sure am grateful for Corey. We make a good team, I couldn't do this without him...no question. 

Oxygen Saturations. So for most of Lia's life, she has had to live with her deoxygenated blood mixing with her oxygenated blood. This caused her O2 saturations to run anywhere from 75-85%. Yours and mine run 98-100%. Lia did fine with a sat in the 80's...but after the Fontan, her deoxygenated and oxygenated blood are now separated like the rest of ours...(well, kinda like the rest of ours). Her sats will eventually be in the low to mid 90's. She does still have the fenestration (pop-off valve) so if her BP increases, she will shunt deoxygenated blood through the fenestration to the side with the oxygenated and that will bring her sats down.  

Now, for the victories....

Surgery. Her surgery went perfectly. There were no complications regarding the logistics of the particular list of to do's and tasks to accomplish in surgery. She did run into an atrial dysrhythmia in surgery that she converted out of on her own. They placed some permanent pacing wires in case at some point in her life she needs a pacemaker. If she doesn't need them, we'll never know they are there. So far her rhythm has been ok and they watch it constantly. I can stare at her monitor for hours and talk myself into thinking I see different things...but I trust the experts. How many times have I told my own patients' parents in the NICU to stop focusing on the monitor? Too many times to count...but it isn't easy to do...

CVICU. We were barely there. I don't think we stayed in the CVICU for 24 hours. She did perfectly well recovering. They tweaked things throughout the day and night she was there in the immediate postoperative period and she responded appropriately to those things. I learned a lot that night. It's all really interesting...in a "personal love of critical care" kinda way. Interesting, but overwhelming when it's your own little love bug lying in that bed. We had absolute fantastic nurses in the CVICU. To Monica, Justin, and Delaney...thank you. Thank you from the very bottom of my heart. 

The Cardiac Floor. Our nurses here have been great here too. We've really been blessed with some good nurses. It means so much to me to see that. I love nurses. I feel like we do some pretty incredible things. I have such a different understanding of what good nurses mean to the family of the patient. We can make or break the experience. It makes me proud of the people I work with...and the nurses we've encountered here. 

Chest Tubes out quickly. Big, big, victory!!!!!

Chest X-rays looking good, and improving.  Huge deal. 

Oral meds going in better...:-)

Go for launch on poop!!!  Finally jumped that hurdle yesterday...and she feels way better for it. 

We need to eat more...but what's new?

Oxygen off today. Her sats are low 90's when she's resting and dip into the mid-high 80's with exertion, but they are ok with that. I happen to be thrilled with those numbers!  I honestly thought we'd never see the 90's. Big win for Lili!!!!

We are getting close to being able to go home. We are ready. We are grateful. Keep praying. 

Let's Just Tap the Brakes for a Minute...

Well, Lia's had a rough 18 hours or so... She's still doing awesome by all Fontan standards, but we have encountered a few issues that we need to work through. She's having a rough time keeping her oral medications down. That's significant when you're looking at trying to go home where we don't have the luxury of IV pain medicine or diuretics. If she doesn't take her pain meds, then obviously she hurts. Then she doesn't want to move around, which she really needs to be doing. If she hurts, she doesn't want to eat, also important. She also needs to be taking her diuretics...most likely she'll go home on those. Those help her get rid of any extra fluid...and will help us get these awful chest tubes out. I keep hearing that once those come out, she will be a new kid. The chest tubes hurt. Plain and simple. They are cumbersome and keep her from moving well. They hurt and keep her from taking a good, deep breath...also a problem. 

The plan is to keep her comfortable with the IV pain meds for now. Hopefully, if her pain is down, she will get up and walk several times a day. This will help move that fluid out of her lungs and that will increase her chances of the chest tubes being pulled. I'm also hoping she will eat a little and will throw up less. We just have to find the right balance of encouraging her without pushing her too far. 

I've said the phrase "tap the brakes" several times in the last 24 hours. We were on a fast track the first two days...but I think it's important to stop and think about what all she's been through. We are only on day three of this thing and that's still pretty early. There's no reason to be trying to break any world record discharge day...even though we really like to win stuff like that. We need to slow down, take some deep breaths, and let her catch up. She's done great, and still is. We will figure all this out. 

In the meantime, I think the important thing to do is to decrease the stimulation around her. We are aiming for a couple of quiet days, where she doesn't have so many people around.  I think she may be able to tackle some of this easier that way. Thank you so much for offering to come and see her. We could not get through this without you guys. Our support system is incredible, and we haven't forgotten that. However, for the next couple days we are asking for not as many visitors to try and give her a chance to focus on herself. Please keep praying though. 

These bumps in the road could probably be labeled as "first world probs" of the pediatric cardio thoracic world. Overall, she's still done incredibly well. Her heart function and all of her vital signs, labs, and chest X-rays are looking good. All the doctors and nurses are impressed with how well she's done. None of that's changed. I'm thinking we will be looking a lot better soon...thanks so much for all the continued prayers. We love you guys.  

Here's the princess...sleeping it off. :-)