Season of Praise

It’s a good season. No, not the 106 degree Texas summer; the season of rejoicing we are in. We are in awe guys. We are celebrating God’s goodness. We are celebrating His healing. We are celebrating Him holding on to the 3 of us through all of this. We have nothing to do than to praise Him
People ask how Pierson is doing and we get to say "Great". If you were to see him running around with other kids, or even by himself you would never know that anything ever happened. He has started wanting to race me again. No, I’m still not letting him win every race. I’ve heard several people say "He’s a miracle boy." Wgat's funny is I never had really thought of it that way. But he is! Even though he didn’t have the worst of the worst heart defects he did have a heart defect that would have killed him and now it’s gone and he’s thriving. So yes, he’s a miracle and to not acknowledge that would be to not give God credit where it’s due!

P’s blood pressure was great this week. Had a little scare on Wednesday and when we went to the doctor it was fine. I think the high BP reading may have been user error on my part. Sigh. It’s probably in everyone’s best interest for me to hang up my stethoscope and blood pressure cuff for a while and leave it to the pros. So, we’re praising God for a healthy blood pressure reading --- and for Dr. Adam’s office. Please pray that lowering his blood pressure medicine will continue to go well.

This heart journey we’re on has absolutely been a trial. Probably the hardest we’ve ever endured. Never in my wildest dreams did I ever think P would be in ICU, or have heart surgery. Never did I think we would see defective pieces of his heart in a specimen jar moments after they were removed from his body. Everyone is going to have trials in this life and guess what? They’re going to suck. There. I said it. Suck. Stink just didn’t seem strong enough. Whether it’s a life threatening illness or injury of your child, losing your husband in a car accident right after you have a baby (that actually happened to my best friend), losing a job, a dream falling through, financial troubles, personal illness or injury… whatever: we’re all going to be there. It’s not a question of if but when. God sure has held on to us, tightly and closely. He loves us. He loves you too. One thing we know for sure, and we are seeing actively lived out in our lives right now is how much closer you get to the Lord through these trials. One thing we never asked through this is: why? Please understand this is not to boast at all – we are so weak but we had SO many people praying for us – and that had to be what it was. We surely didn’t pick up Matt Chandler’s attitude of "why not me". God just held so tightly to us that we had peace that this is where He wanted us to be… even though it is not AT ALL where we wanted to be. Oh, how He loves us.

One of our goals will be to make sure Pierson knows to live his life in constant praise – even in the hardest of times. God has so much planned for this little guy. I’m looking forward now more than ever to watching the Lord’s plan unfold for his life. Look at his story already! "Pierson Don" means "Strong Leader of Men". We pray God uses him to lead others to and for the Lord his whole life. God may have begun this work in him now as a young child. If so, praise God for that.

In other news, Jeff and I went on a quasi-date tonight to his cousin’s 30^th birthday party. It was 80’s themed at the bowling alley and it was fantastic. We all got dressed up like people from the 80’s and looked delightfully ridiculous. Pierson I think was pumped to get some serious grandparent time while we were gone. We are thankful for grandparents who live near by. Here are some pics from this momentous occasion. Proof that life goes on after heart surgery. Our God is soooooo good.

John 1: 2-4 Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.

My view of our angel from the front seat. Yeah, he's feeling better!



In all our 80's glory!



 







I Had a Moment

So I’m sure all my ministry and counseling friends are going to analyze my coping processes when I tell you all this, and all of the CHD parents are going to probably have a "been there" moment – I experienced the most unexpected thing Friday.

After I put Pierson down for his nap and cleaned up the living room, it happened. It was like all of a sudden out of nowhere it hit me: What the heck just happened? I think that now the "storm" has cleared and we’ve had some time to relax and reflect, it all of a sudden dawned on me, everything that has happened. Yesterday marked exactly one month from the date P was diagnosed with Coarctation of the Aorta. I think that ever since then I have been so involved in the "now" of the situation that I never had time to really realize/internalize the enormity of what was happening. I mean, I understood it, I was living it; but now it’s on a reflective level. I don’t know if it was prompted by the unprecedented half hour cuddle session Pierson allowed me before his nap or just a time of calm or what, but it happened. I got to have a moment with me and my emotions. I think it was healthy.

We are beginning to really do life again. We are going out to eat, socializing, going grocery shopping, playing basketball (P’s shot and accuracy is no worse for the wear by the way) and assuming our normal every day duties and activities. Next week will be our busiest, most alive week we have had since the surgery. We may even get to swim next week! Woohoo! Pierson finally has a scabbed over chest tube site so putting this fish back in the water is on the agenda. It’s an extreme honor when we run in to people who have been praying for P while we’re out and they get to see Pierson thriving for themselves. It’s an honor to know how many people from all over, some who we have never met have been praying for Pierson. We are so humbled and so grateful. Rest assured, God has heard your cries.

It is so nice to look forward to things we have in front of us now. We appreciate each day, each moment, each milestone more now than ever. We fell in love with Disney World last year and we’re going back soon. We had no idea how special this trip would be to us when we booked it in December. This trip will be more of a celebration now than ever. P starting in the 3 year old class at school, Rangers games, UT games, UNT games and homecoming, Halloween, Thanksgiving, Christmas…. It’s not that far away! Every event like that should be celebrated. I think it may just be that we get so lost in the every day and the expected that we forget how precious every moment is. We really shouldn’t do that. Sometimes it takes something like this to open our eyes to the gift that is each day. Each "play with me" is special, each sweet little conversation is a precious blessing -- I pray that we will be able to continue looking at P’s life, and life in general with that same perspective. It’s important to live in "get to" instead of "got to".

Oh! I also wanted to pass this along. I had a friend share the website to this organization called Preemptive Love. It’s an organization bringing life saving surgery to kids with Congenital Heart Defects in Iraq. Before, these kids would just die. End of story. No hope. That’s what would have happened to Pierson. We’re blessed enough to live in the DFW area near three fantastic hospitals that care for kiddos with CHDs. (Pretty sure we were at the best of the three!) We’re lucky enough not to be living in a war zone too. The blog on the Preemptive Love site is pretty amazing too! If you’re looking to tithe creatively this might be something to look in to.

I leave you with a picture of Pierson thoroughly enjoying a bowl of spaghetti with sauce that we (P and I) made ourselves. It has all kinds of veggies in it and flax seed. Gotta get as many nutrients in this kid as possible. He has some kid-hood to live to the fullest.

Music To Our Ears

We are back from the cardiologist. Pierson was yet again a fantastic little patient. Dr. Laird even told him that he was very proud of him. We took Pierson’s blood pressure and it was a beautiful 100/55! He wants it no higher than 109/65 so we were happy… especially since we started out at 151/95!

After that we went in for P’s echo.

P waiting for his echo to begin

Dr. Laird actually did the echo himself which we thought was pretty neat. I watched the echo screen intently to see if I could tell any difference in this time and last… of course I couldn’t. Eh, it was worth a shot. When we sat down with Dr. Laird after the echo to go over the results, Guess what we got to hear? "Everything from the surgery looks great!" Thank you Jesus!!! We still have a ways to go but that was just the news we were longing to hear. Pierson’s heart had been under so much stress for such a long time that the actual heart muscle itself is still thick. That will take a while to resolve so we won’t be signing him up for soccer this year or putting him back at WinKids just yet or taking him out to play in the heat of the day this summer but those things are ok! We are also about a week away from being able to resume life as normal. Your heart gets thick when it fails – but we never got there with P. Praise God! This should resolve. We are also going to work on taking Pierson’s blood pressure medicine down. This will mean going in to Dr. Adams’ office once a week for a nurse BP check. I could probably order a cuff and do it myself but that’s not something I want to chance. We’d just assume leave that to a professional. Hopefully we will be able to take his dosage down by .5ml every week until he is off of the medicine. If all goes well he should be off of it in 6 weeks! Woohoo! Our next scheduled appointment is in October. That seems like forever away but it’s only 3 months. We have been on this journey for nearly a month now and it seems like it all just began yesterday, so 3 months I’m sure will be here before we know it. We will be approaching the throne of grace for this transition and hope that it all goes smoothly.

After P’s appointment we went by Sprinkles to get him a cupcake as a reward for being so good and cooperative at the cardiologist. He was counting on a Texas Rangers cupcake but apparently they only have those on days they have home games. P was a little disappointed but settled for a regular red velvet instead. The last time we swung by Sprinkles to get a cupcake was the day of our diagnosis and it was all I could do to order without bursting in to tears. I really felt like we were celebrating today – because we were. We are rejoicing and praising God for all He has done and all he has yet to do in our little boy!

So this is kind of funny – we had the news on while we were playing last night and there was a report on how Nolan Ryan was hospitalized for his heart condition. Pierson stopped playing and looked at me and said "Oh no! He had to go to the hospital because his heart was sick too?" I told him yes he had to go to the hospital too. "Oh. Does he have a boo on his back too? God had doctors for his heart?" Yes he did baby, just like He provided doctors for your heart when it was sick. "I hope he feels better soon."

Pray that Pierson can come off his hypertension meds soon. Pray that the heart muscle thins and heals itself. Pray for P and for us as we resume our normal schedules and routines soon. God is so good to us. Looking at where we are and where we could have been is just amazing. Thank you God, Thank you God, Thank you God! All day long God has been speaking to my heart about trusting in Him and not being afraid. I thought I would leave you with this verse and a few pics of our precious boy!

Isaiah 26: 3-4 You will keep in perfect peace those whose minds are steadfast, because they trust in you. Trust in the LORD forever, for the LORD, the LORD himself, is the Rock eternal.

Enjoying our celebratory cupcakes in the backseat

Throwing pennies in to the fountain outside of Dr. Laird's office

Weekend Adventure and Truth Tomorrow

Pierson is sound asleep right now so I thought I would forgo folding the laundry and update the blog.

P is doing great. We have even made outings! We actually made a big outing this weekend. We are praising God that Pierson was well enough to go on a weekend trip to San Antonio. We had this trip planned for months and were prepared for the fact that we might miss it – but P was doing great. We checked with our cardiologist and our cardiac surgeon to make sure we were good to go and they both said to go for it, but be smart. No problem – we can do that.

Jeff and P getting the dolphins' attention

Feeding time with P, Jeff, his cousin Josh and his son Eli

The trip wasn’t just any weekend trip to San Antonio, it was a "last hurrah" for some of Jeff’s cousins/some of our dearest friends who are moving to France next month. 5 of us families/couples rented a house in San Antonio for the weekend and planned to spend the time together: eating, exploring, fellowshipping, playing. And that’s exactly what we did. Pierson pretty much did the same thing he would have been doing at home with one exception: We made an early morning excursion to SeaWorld. We got there at 9am when the park opened and it was a perfect 84 degrees. We didn’t want to get Pierson hot at all so we knew it would be brief, but God really provided a cool morning for us to take P out in to. Pierson’s favorite part was feeding the dolphins. It was pure joy to watch this kid who just one week ago was eating breakfast in a hospital bed after heart surgery laughing and feeding the dolphins fish. It was just, a blessing.  What a faithful God we serve. After that we saw Shamu and the Cannery Show then retreated to the indoor penguin exhibit before heading home. It was brief but it was just right. Pierson pretty much spent the rest of the day sleeping until dinner time which was great.

The rest of the time Pierson spent playing with his friends around the house. We couldn’t take him swimming because of his incisions but that was ok, no one else went swimming either.

Bath time is still a struggle for us. Friday night the guys went grocery shopping while the girls took care of getting the kids bathed and to bed. Our friend Sarah helped me out with P’s bath. Luckily she’s a PA and not frazzled at all by a screaming child. He still screams bloody murder. He doesn’t want you to touch his incisions – even though they’re fine. As a matter of fact the middle of the incision on his back is pretty much healed… not even a scab! The sides still have a bit to go but they’re coming along very well too.

So today, we are resting, doing laundry and getting ready for Pierson’s cardiology appointment tomorrow. It’s a long appointment: EKG, echocardiogram, talking to Dr. Laird and finding out how Pierson is doing after the surgery. We will find out if any scar tissue has formed on P’s aorta and see how well his aorta is doing after taking off the additional unhealthy portions. Moment of truth here: I’m kind of scared/nervous. Ok, not kind of, I just am scared and nervous. We think the surgery was successful and that Pierson is doing fantastic. We have defiantly not lacked for prayers for his recovery. We have no reason to believe that this echo will be anything short of perfect. It’s just that this is the moment of truth. Real proof on how it went. I think part of it is that the last time we were there we got a diagnosis and our whole world turned upside down. We are praying that tomorrow we get to hear Dr. Laird say "Everything looks great!" – we didn’t get to hear that last time. We are thankful for Dr. Laird and his staff. Dr. Adams could not have referred us to a nicer guy and better cardiologist. Please be in prayer for our appointment tomorrow. Pray that everything does in fact look great. Pray that Pierson remains a great patient and he behaves and is cooperative and still during the EKG and Echo.

Pierson has just done so great! I was giving an update to my coworkers the other day and thanking them for their prayers. I will tell you the same thing I told them. We could write off Pierson’s rapid and wonderful recovery to kids just "snapping back" quickly but that’s not giving credit where it’s due. We know the truth. God has heard the cries of his people calling out for healing and life for Pierson. It is God’s hands and His doing that Pierson was well enough to feed the dolphins this weekend. It’s God’s doing that sometimes we have to remind him not to jump off the couch because he just had heart surgery and still has stitches. God is good to us and has not forgotten us. Pierson was made with God’s hands, heart defect and all. He is His child and He loves him. He has not forsaken us just because Pierson did not have a "perfect" heart. He is the same God we had a month ago and will be the same God tomorrow.

I will update tomorrow and let everyone know about how P’s appointment went!

The 3 oldest kiddos on the trip posing

Adventures and Reflections at Home

We have been home for 4.5 whole days now. That’s officially half a day less than we spent in the hospital. We were excited to take Pierson home but I think we also had just a teensy-eensy bit of fear. We was still pretty fragile when we took him home but the good new is we haven’t broken him!

I set up a bed for Pierson and myself on the couch – here’s why. We’re afraid to let him sleep in his own bed for two reasons: 1 – We’re afraid he’ll roll of the bed and bust open his incision 2 -- He doesn’t have all of his dexterity back yet. If he rolls over he can’t always get back up. So if I put him on the inside of the couch and I sleep on the outside (I’ve pulled our oversized ottoman next to the couch) then he can’t roll off and if he gets stuck when he rolls over then I can help him out. The night before last he rolled over on his stomach and woke up panicked yelled out "How am I to get up? How am I to get up?!?!" I rolled him back over and he went to sleep. Problem solved. I’m really glad I was right there. This will probably ruin any good sleeping habits we had but truly, that’s not really at the top of my "things to fret over" list.

You look at him and think he’s just a normal kid but the truth of what actually happened is still fresh in our minds. He isn’t 100% back to normal but he’s getting there. He will play for a while then rest for a while, play for a while, rest for a while. He is napping like a champ! He mostly wants to play with his garbage trucks and read books and watch movies. We made some homemade playdough yesterday and that has been a source of great fun. He has had 2 friends over for brief visits and it has been good for him, with peers around he lets loose a little bit more. Every day we can see his energy level increasing. We know God is active and healing him. We finally convinced him to let us take his pressure dressings off of his and chest but he was absolutely not willing to let us take the one off of his wrist. I’m sure they were both sore… those spots were where lines were inserted directly in to his heart and major artery.

Let me tell you how I had to get the pressure dressing off of his wrist. That thing was starting to come loose but he did not want it off. He convinced us to put a piece of tape on it Sunday when it started to come loose. So, last night/this morning from 3:15am – 4:45am I was up hovering over him with a pair of rounded tip scissors (I was thinking safety here people) and every time he would shift and his arm would come up I would take a few snips of the tape. Then he would feel me messing with his arm and tuck it away. Finally I snipped the last bit of tape. VICTORY! I stuffed it waaaaaaaaaay down in the bottom of the trash can so he wouldn’t see it. Thankfully he hasn’t asked about where it went. Whew!!!

He will not however let us take off the oxygen stickers off of his face and has refused to let us take off his hospital and allergy bracelets off. The oxygen stickers have got to go and our goal is to wash those off in the bath tub tonight. We’re fairly certain this will result in a melt down but it has to be done. I asked him why he didn’t want us to take off his hospital bracelets and he told us it was because he loved them and they had his name on them. Eventually he’ll let us take off the bracelets… so whatever.

The reality of what has happened and what could have happened is heavy on our hearts this week. Everyone we came across in the hospital – nurses, techs, doctors remarked that Dr. Adams "made a really good catch." We know this. If a Coarctation of the Aorta is left untreated it can result in stroke, a ruptured aorta, premature coronary artery disease, organ failure, and cerebral aneurysm. You die from those things. We would have lost Pierson. It is also very real that we could have lost Pierson in surgery or during recovery. God put is in capable hands and was over P’s surgery and is over his recovery.

I’m working on a bound book for Pierson to have that will be on his level about how God has taken care of him. His heart surgery will not be what defines him --- but it is an important part of his story and is an example of God’s plan and provision for his life. He needs to know that God provided him with very special doctors who do God’s work with their talents. Pierson needs to know that his life is not futile or a coincidence but ordained, planned and purposeful. He needs to know that so many people have interceded in prayers on his behalf. . God has a lot of work to do in this little boy and a lot He has already done.

Please keep praying for Pierson’s perfect recovery. Pray for our doctor’s appointment next week. Pray that the echo is beautiful and completely void of scarring or defect. Pray his EKG is perfect. Pray that Pierson continues to be a good little patient and is still and cooperative during these appointments.

Working on his home made playdough

working hard on his playdough construction project

Home Sweet Home

Guess where I’m blogging from? Home. Yep! Home. Can you believe it? Our God is so cool! A little over 72 hours ago P had heart surgery and now we’re home! Awwww. It is glorious to be home. So here’s what we’ve been up to these last 40 or so hours…

We were released from the ICU around 11ish Friday morning. We received the most incredible care on the floor. By the end of day 1 I was thinking our odds of being moved to the general floor the next day were slim to none. Pierson was tired and in pain and having a hard time walking. It was hard. But – the next morning we woke up and it was like we had a whole new kid. He progressed so much overnight (because of the prayers for sure). I slept on the foot of his bed that night. I didn’t want any test to be done, lab to be drawn etc without me being there. It’s not that I didn’t trust the nurses, it’s just that if he woke up I didn’t want him to be scared. We have a stud, he did great with everything that had to be done during the night.



By the next morning the ICU hospitalist came in and said he thought we were ready to move on up to the general floor. Then we met with the dietician who made a few dietary recommendations for P – as it turns out he’s a bit anemic. Who knew. There were a few other things we needed to do first… like pull his central and arterial lines and remove some IV’s and tubes. Holy cow. That central line is forever long.

The incision across his shoulder blade is how they got to his heart. The tube coming out of his chest in the chest tube. Please pray for perfect healing of both of these incisions


Right before pulling his central lines and arterial lines. P is a stud.



We could not believe it when they pulled that huge thing out of our little boy! It hurt but he did great! They also had to remove the arterial line which was really… um… have I mentioned our kid is a stud? I think I would have had a complete meltdown if that were to be me in the bed. They got a wagon for him to go upstairs in and he needed to walk to it. He was so not up for that but he soldiered on. It was only about 10 feet but it must have felt like 10 miles for him. So up we went!


Last picture in the ICU







 Once we got upstairs we got settled in, ate a little lunch (P’s first real food in 3 days!) had some visitors and then P was down for the count… for 4.5 hours! He woke up about an hour before his best friend Jack and his mommy arrived to visit. They played together with cars in the bed for a little bit and P pretty much laid there rolling the cars around. Then P asked me to help sit him up and said "Jack! You want to ride in my wagon?" So we loaded the boys up in the wagon and rolled them all around the floor. Best friend therapy was the best therapy we could have had for P.  

Jack and P playing in his bed on the general unit



The boys looking at the awesome train mural. Little boy heaven!



 After Jack and Christi (his mom) left P rested for a while and then we had round 2 of visitors. My aunt and little cousin came, my parents also came by and then my director of nursing and her husband came by (bearing gifts that included a truck sticker book, Thomas book and a new UNT football shirt for the 2011 season might I add) and then Pierson got to eat his second meal, mac-and-cheese. He wasn’t eating much but he was eating and it was staying down (which can be a problem after all the anesthesia and surgery meds) He was in heaven. He kept sliding down while feeding himself in bed and we had to keep picking him back up. Luckily my director of nursing was a congenital heart unit nurse for a very long time and she knew how to do this trick with a pillow to make him sit up and relieve pressure from the incision sight. Genius! A little later that night we gave P his first bath on our own since the surgery.

I will never take a run-of-the-mill bath time for granted again! Washing his incisions caused pain so that wasn’t fun, we couldn’t get the places on his wrist and shoulder that had pressure dressings wet, we couldn’t sit him down in the bathtub or fill the tub with bubbles as usual and he couldn’t understand why and he was getting really tired by this point so it resulted in a full blown meltdown which freaked Jeff and I out because we didn’t want him to raise his blood pressure. Whew! That was harder than I remember bath time ever being. We all slept really well that night.

The next morning started with a blood draw, then we went on another wagon ride to x-ray. The x-ray assistant couldn’t understand why he couldn’t raise his arms, especially his left one up for the x-ray. It’s because he just got sliced and spliced back there lady. Finally the real x-ray tech came out with the same spinning light ball thingy that Dr. Laird had in echo so he could raise them up a little bit. Pierson has been very guarded with his left arm. He tucks it and carries it close to his side/front as if he had a sling on it. Here’s a pic of his incision. On the way back from x-ray we ran into Kathy, Dr. Mendeloff’s nurse practitioner and she said she’d be up to see us later and that we could probably go home today. WHAT?!?! WOOOOO-HOOOOOOOOOO!!!!!! We stayed cautious though incase it didn’t happen so we wouldn’t be disappointed. They said 3-7 days in the hospital and we were on day 4 so we were defiantly in that window. Pierson was the best little patient. Not once did hey say the phrase "I want to go home". We told him we would spend a few nights at the hospital and we are sure that God just helped him have peace in his heart about that.

He was pretty tuckered out after that so he went back to bed. Pierson had asked about his little "girlfriend" Bethany pretty much first thing when he woke up that morning and Bethany’s parents sent a video to Jeff’s phone for Pierson. It was Bethany all dolled up for ballet class saying "I hope your heart feels better. I miss you come home soon. I love you!" Pierson got the biggest smile on his face and we think he even blushed a little!

P watching the video of his little girlfriend!

P's Beads of Courage necklace. It tells quite a story!

Pierson took a pretty serious nap after that. Slept through medicine, blood pressure and vital check and everything. Later that day Dr. Laird came in and said that the chest x-ray, blood tests and P’s activity level all looked great and we could go home. WAH-HOOO!!!!!!!! Praise God! I think we would have grabbed Pierson and sprinted out of there right then if we didn’t have a sleeping 3 year old, luggage, balloons and that pesky discharge paperwork to take care of. We also asked Dr. Laird to explain in detail a little more about what Dr. Mendeloff had said about Pierson’s aorta. He said that a normal coarctation is present on an otherwise well developed aorta. As it turns out, Pierson’s aorta in the area of the coarctation was not normal either. It was small and underdeveloped, which is why Dr. Mendeloff had to remove more of the aorta than just the coarctation. Dr. Laird said he was suspicious of that during the echocardiogram and that was why he had ordered the CT Scan. We had wondered why. It’s good to know! Another way God has provided for us.

While we got ready to pack up the child life specialist came in and gave us our final beads for Pierson’s bead of courage necklace. Each bead represents a milestone, procedure, test, surgery or act of courage. Pierson ended up with a pretty significant necklace. They tell the story of Pierson’s journey through this. We’re lucky to only have one necklace. Some families have several. We pray that this is the only surgery or procedure Pierson will ever have to have again in his very long life and that our bead collecting stop here. It will be cool someday for him to show this necklace to tell his story. We know we’re lucky to just have a coarctation. Of all the CHDs you could have this is the one you want. It usually requires only 1 surgery and then they can go on with life as normal after they are recovered. We met several families in the Congenital heart surgery unit who are in for 4^th or 5^th visits or who have been there for months. Months. Complete misery. Pray for those families as you continue to pray for P.

Now that we’re home it feels so much better. Pierson is not by any stretch of the imagination better yet. He tires easily and guards his left side of his body. We’re washing everything we use in hot water to kill any germ that might make its way in to our house. Loading Pierson in the car is harder than you might think. You can’t pick him up like you would a normal 3 year old to put him in the car seat. You have to make a bench with one arm/hand for his tooshy and use the other hand to support his head/neck, avoiding his back and incision all the while. That being said, we’re not going any where for a while. Just as well. It will give Pierson a chance to recuperate and not over do it.

Our last picture before being discharged! Praise God!


We're outta here!



Last night was rough. He woke up every few hours screaming that he had to go to the restroom. He did, then he went back to sleep. I don’t know why that was? Lingering lasix? Whatever. He’s home.

Our challenges now include building up his stamina back up and making sure he chest tube sight and incision heal and are kept clean and properly cared for. Being in home health I’m a bit of a wound care freak and have seen worst case scenarios so wounds concern me. Pray Pierson’s wound is free of infection and heals beautifully. Pray that Pierson’s heart heals correctly. Specifically we are praying that no scar tissue forms on his aorta. "Realistically" we should be hoping that little scar tissue forms, but we’re praying that God would make it where no scar tissue would form at all. We have faith.

We have a follow-up cardiology appointment soon. Keep praying for P. We’ll keep updating here on progress, milestones he is reaching in his recovery and requests. Please keep praying for our little boy! Surgery is over but we still have some miles to go. We look forward to the day when we can post that Pierson has been released from medicine by his cardiologist. We can’t wait to put up his soccer pictures on this blog. That’s in the future though… today we’re praying for our needs for today.

The last 2 days...

 A little over 24 hours ago we were in our house, packing our bags, heading to a new adventure for us. Pierson was actually excited about going to the hospital. He chose a rolling backpack with Cars on it to be his "hospital bag". We filled it up with some of his favorite things and he was ready to go.

When we got to the hospital they let us know P's surgery had been pushed back to due to a complicated prior case. We have no problem sharing Dr. Mendeloff with other heart families who need him. There's enough Dr. M to go around, for sure. So we did our pre-op, watched some cartoons and spent a lot of time in the playroom. P was in heaven! He played forever. Then something really cool happened. Jeff looked at a guy walking by the playroom and said "That looks like Mike" Sure enough, it was our new friend Mike. A few posts ago I mentioned we met with a couple who has an a-dorable baby boy who also had CoArc surgery when he was still a newborn. They have been an extreme blessing to us. We felt armed going in to this because they took the time to share their story with us. He came by to drop off some yummies they had made for us, to hang out with us encourage us, and even more, to pray over us. Major, major blessing. It really helped keep us in the right frame of mind and was a major spirit boost. He also went to the waiting room and visited with our family and showed them pictures of his son’s surgery and gave them an idea of what to expect. This helped our families a ton.



Shortly after Mike left they called us back for surgery. Pierson's usual naptime is around noon and it was about 1:30 by this point. They gave him a little "goofy juice" to help take the edge off of the pre-op and separation process and a few minutes later he was sooooo out. I had climbed up on the bed with him when they gave him the medicine and he fell asleep in my arms. The nurses told me to stay put and that they would wheel him in to pre-op just like that in order to make this easier for everyone. They left us alone real quick while they went to go get something else we needed before we went to pre-op and we prayed over Pierson and cried a little too. So away we went. He stayed passed out the whole time. The nurse and anesthesiologist came and talked to us. Then they took him away. Jeff and I had waterfall eyes. Seeing the top of that little blonde head roll through those big doors *sigh* just made us feel sad. This was it. This was heart surgery on our baby.

We felt fairly prepared for this. We put this in God's hands because we are completely helpless in all of this. Zero control. Usually I struggle in zero control situations, this time though, I’m sure through all the prayer we have and are still receiving, this time -- I’m ok with that. I know that sounds weird but I just have a peace. Jeff too. It’s gotta be the prayers because that’s sooo not like us. We’re planners and do-ers. No can plan or do in this situation – yet we had peace.

Waiting for us in the waiting room were our parents, Jeff’s brother and my uncle Jerald. He’s a hospital chaplain by profession so he has just a little bit of experience in these situations. One of my coworkers who happened to be in Dallas also came and waited and gave me a giant hug. I had no idea that her daughter (who is a college dancer) had also had heart surgery to repair a hole in her heart. That was some great heart-mom to heart-mom bonding right there. My uncle prayed over P and us a little while later and then we chatted. Jeff and I actually ate food, which was good. We had not done that yet that day. Kathy, Dr. M’s nurse practitioner came out to let us know that the surgery had started and everything was going well. Then we waited some more. We looked at the tracking board and it notified us that P was being sutured up and the surgery was ending. Dr. Mendeloff came out shortly holding a specimen jar with 3 things in it. The "things" were piece of Pierson’s aorta. He showed us the coarctation and it was just mind boggling. We’re going to try to doctor up the picture where you can see the coarctation better. If you have a ball point pen around pick it up. Look at the tip or pen that you write with. The opening that P’s heart was trying to get oxygenated blood to his body through was that small. It’s supposed to be muuuch bigger than that. Think 2.5 sonic straws wide. That was fantastic to see and was also just another reassurance that God has been with us the whole time. He also had to remove a additional part of P’s aorta that was too narrow as well. This absolutely would have killed Pierson if it had not been caught. Your child having heart surgery is hard, but not a tragedy. Losing our child absolutely would have been a tragedy. Thank you Lord for Dr. Adams taking this seriously. Thank You Jesus for putting us with Dr. Laird who gave us an accurate diagnosis. Thank you God for putting us in the hands of Dr. Mendeloff… the miracles you use his hands for God… indescribable.

About 10 minutes after Dr. Mendeloff came out the surgical team rolled Pierson by us to take him to the ICU. The anesthesiologist, Dr. Campaigne stopped and let us look at him. I guess he could tell that I was dying to touch him and kiss him because he popped the railing down on the bed and said "Go ahead Mom, you can love on him." So I did. It was glorious and bittersweet. Mike and Jennifer had done a fantastic job preparing us for what to expect when P was out of surgery and in the ICU which was great because I think we would have been paralyzed if we hadn’t had that knowledge beforehand. Knowing that this surgery is behind us is like 1 lap down in a two mile run. We’re far from done but we’re in it.

This is how we saw P for the first time as they were rolling him into the ICU

Pieces of P's Aorta. The hole in the middle of the white is all the room he had for blood to go through. It should have been completely open

Surgical team rolling P into the ICU

How we found him an hour post-op

Pierson had a busy night last night. He woke up briefly and told us he was hurting, so our amazing night nurse Amber gave him some pain meds. It was like having a newborn. Every sound he made we were hovering over him. He asked to put on his "daddy shirt" at one point too. The daddy shirt he refers to is a white t-undershirt. He prefers to sleep in those. I told him not yet, but soon. Amber gave him medicines all night long, flushed all of his lines, and closely monitored his vitals. I have never seen anyone so proficient in IV meds and care. It was absolutely a sight to behold. She really made nursing look like the art form that it is. She took fabulous care of our boy. This morning around 3am they did a dressing change and we got to see P’s incision. Wow. It’s around 4 inches long. No wonder he’s hurting! We are thankful his sternum is in tact though. Kathy, Dr. M’s nurse practitioner came by around 5 and pulled his chest tube. Yae! 1 down.. like… I don’t know… 9 to go? Jeff and I "slept" a little… but we’re doing great today so we’re good.



Pierson is still in pain and still requiring a little oxygen. They were planning on d/cing the oxygen and pulling most of his lines… getting him to eat icechips, then food, then up to walk but that’s on hold for now. His blood pressure is still pretty high and he’s on a lot of hypertensive meds to keep it down. It has to be kept down so the sutures on his aorta stay in good shape and can heal. His body had adjusted so well to not have a fully functioning aorta that it’s taking a little bit for his body to get the message that it’s ok to drop the blood pressure. He will be on an oral hypertension medication after he is out of the hospital for a few months. He took his first oral dose (on top of his IV dose) this morning like a champ! He’s moving a little bit slower than "expected" but that’s ok. God is still good and is still healing our boy. He got up to walk right before he went to bed tonight and it was painful. He wanted me to carry him but I couldn’t, he had to do this to get better. He still has more milestones to reach tomorrow before we can leave ICU and go to a regular room. Pray that he reaches these milestones soon as they will put us one step closer to resuming life as normal.

We can not thank you enough for praying for our precious Pierson and our family. God hears the cries of His people. All of the sweet emails, facebook messages, etc have been incredible. My company prayed for P pretty much all day yesterday which is way humbling. It’s wonderful to work for a faith based company every day --- but on days like these and times like this, knowing that your co-workers, even the ones you don’t work directly with or even in the same part of the southwest with are praying is immensely incredible. Also the 4^th and 5^th graders from Southmont learned about what was going on with P yesterday because our children’s pastor came up to the hospital to visit us. She told us that without any prompting from her they stopped everything and all prayed over P. Yeah, that makes me cry when I write that. These kids don’t even know him yet they cared enough to approach the throne of grace! Our minister and his wife came by tonight on their way to kid’s camp here in Dallas and they took pics of P to show the kids. I told them to make sure we know how grateful we are for them and their prayers.

Please keep those prayers coming! Pray fervently. Pray that Pierson’s blood pressure regulates itself, pray that his pain is under control and resides soon. Pray that he has a restful night tonight. Pray for the lasix to do their magic and help him release the fluid his body is so desperately trying to hold on to. Pray for complete, whole and full recovery. This hospital and the ICU are wonderful but we would like to go home soon because that means our boy is better.


Visit from his favorite aunt and uncle



Wagon ride around the CHICU



P on his walk tonight



Quick Update

We'll have a longer update with pictures a little later, we're about to go back and see him in the CHICU. Pierson's surgery went well. Dr. Mendeloff brought out the section of his aorta and it was just something to see. The part he removed had an opening only about the size of the tip of the ballpoint pen. God is good to us. More details to come. Thank you for your prayers, please keep them coming!!! Our God is greater!

Today and Tomorrow

It’s for real that at this time tomorrow we will be in the CHICU. P will be out of surgery and that part of our journey will be behind us.

Today we had a different part of our journey: Pre-Op and tests. We weren’t allowed to feed P this morning and had prayed that he wouldn’t be hungry. God answered these prayers. He only said he was hungry once while we were in the waiting room. We are beyond blessed to be parents to a handsome little boy who may very well be world’s best pediatric patient. He patiently sat on my lap and cuddled as Jeff and I answered questions, filled out paperwork etc. We met lots of nurses and Dr. Mendeloff’s surgical nurse Kathy. Everyone was super nice and remarked on how good P was. After the pre-op we went to the lab and Pierson had his blood drawn his first blood draw ever. He watched and didn’t even flinch. He does however bleed maroon which is concerning, not for any medical reason (actually medically it’s great) but because this means he may be destined to be an Aggie. I’m not sure how my dad and his family will take the news. Hook ‘em Garners!

After we were done there we went back to get a CTScan. The scan required contrast dye to be put through his body and they also needed to sedate him because world’s best patient or not, a 3 year old tends to be a bit squirmy during a CT Scan and they need them to be perfectly still to have accurate images. They let Jeff and I both go back. Pierson looked at the CT machine when we got back there and I said "Oh my goodness. Do you know what this is?" P "What?!?" Me: "Buzz Lightyear’s spaceship!" His eyes got wide and he got excited. The anesthesiologist was so great! It was almost like he had done this a time or two before. He let Pierson smell the mask used for anesthesia and get used to it then he turned the gas on. Pierson didn’t fight the mask or anything…. Just breathed in the gas and drifted off. That was hard to watch. After he was out Pierson (and Blue Amos) stayed and got a CT and Jeff and I went to the waiting room. We both teared up after that. I don’t think it would have bothered us if he was just got back for a CT but knowing that this was just part 1 was a bit daunting. He was only back about 10 minutes and then they came back and go us. They put me in the wheelchair and the doctor handed him to me and wheeled us to day surgery recovery. He was a little fussy but then the nurse got him some goldfish crackers (his favorite) and a slushy to drink and turned on Disney Channel. He perked us pretty quick after that.

Coming to after his CT Scan

 

After that we went back to x-ray and Pierson made a new friend, the radiology student. He was so great. I don’t know if this guy is planning on working with kids or not but he totally should, he was fabulous and helpful. Pierson got away with a toy motorcycle out of the deal. We went to the fountains at the hospital after that and Pierson got to throw coins into the fountain which is one of his favorite things.

One of P's chest x-rays

That visit today… it was like the final lap. This is here. It’s tomorrow. If only we had the option to put it off… but we don’t. This is not something we have a choice in, he has to have heart surgery. This time tomorrow we will be hanging out in the CHICU and Pierson will have had his surgery… it’s crazy to think about.

Pierson slept pretty much the rest of the day. Some members of our Sunday school class came over to our house tonight and brought us a care package they made up as a group. It’s pretty much everything we could ever need for an extended hospital stay. This takes some weight off of us. There are things for us and things for Pierson and there is no way that we could possibly need anything for entertainment or snacking that wasn’t in that bag. Speaking of bags… we still have to pack. Usually when you pack you’re going on a vacation or fun trip. This just feels wrong. We’re packing for a not fun time at all!

We took Pierson shopping for a new bag, he chose a Cars bag, of course. He also chose 3 new toothbrushes (all of which are coming with us) a new sketch pad, new pajamas, twist crayons and some other treats. He’s doing ok with the whole going to the hospital thing. God is good to us and is answering the prayers of His people to make this possibly traumatic experience ok for him.

We are dreading handing him over tomorrow. Dreading it. We are asking you guys to cover Pierson in prayers tomorrow. Pray for the surgeon, Dr. Mendeloff. Pray that the spirit of the Lord be with him as he operates on Pierson. Pray the Lord’s hands would be over his. Pray for the nurses and surgical staff caring for Pierson. Pray they be attentive and focused on Pierson and his needs. Pray for Pierson’s body and heart. Pray Pierson heals quickly. Pray the he comes off of the ventilator fast and that we can "get him naked" (remove the tubes and wires needed in the CHICU) quickly. We are asking the Lord that Pierson will have a remarkable recovery. We pray that no scar tissue forms on his aorta and that he will never require an angioplasty. We pray that this is the one and only time we will ever visit the CHICU and hospital as a patient.

Pray also for our fear level. I have this lump in my throat that won’t go away. That’s going to be a long few hours between when we let go of him for surgery to when we are reunited with him in the CHICU.

It’s not even a question that we’re going to be crying tomorrow. I’m crying as I write this. God is with us. He hasn’t let go of us. We are still walking where He wants us too… even though it’s harder than ever.

Happy Today... Praying for Tomorrow

Oh what a day. Gloriously fun, relaxing day. There were even points in the day when for a few moments we forgot what was directly laying before us. That was a blessing. This was not just any regular July 4, this was the last day of pure unadulterated fun before a not so fun time – so we decided to soak it up!

For a few years now we’ve had a tradition of having some of our closest friends over for food and fun then migrating towards UNT for the fireworks show. We had already had this all planned out before we got our CoA diagnosis nearly 2 weeks ago and weren’t about to cancel it. What would be the point in that?!? So around 5 everyone got here. Burgers and dogs were cooked, our nearest and dearest friends were all around us, kids were playing it was everything we could hope for.

Here are a few of my favorite pictures of today.

I'm usually a sugar nazi but we figured, he's having heart surgery in 2 days... let him eat (cup)cake!

Our sweet little family (plus P's love) after fireworks

Yep, this is our little heart patient!

We have memories of some of our favorite July 4ths past and this one will be no exception. The difference is we will have these memories to look back on in the days to come that are tough. They will make us smile and help us look forward to July 4, 2012 when P’s heart will be better and all will be right with the world again.

Tomorrow early afternoon we go in for a CT Scan of all of Pierson’s cardiovascular system. We also have blood tests and x-rays. Please pray for us. Tomorrow will be a long day for Pierson. Pray he continues to be an amazingly fantastic patient. Pray that he doesn’t get too hungry or thirsty since we won’t be able to do much other than popsicles early in the morning tomorrow. Pray for distraction for P. Pray for Jeff and I to be attentive listeners and be acutely aware of what Pierson’s needs are and what we need to be doing to make this as easy as possible for him.

It blows my mind to think that the day after tomorrow we will be spending the night in the CHICU with our baby hooked up to monitors and machines. We covet your prayers!

A New World, Sanctification and the Sweetest Songs....

What a season we are in. We’ve had a lot the last few days. This week is winding down which means next week, the week we’ve been… waiting for? Dreading? Looking forward to? Is fast approaching. We have been using this week to wind down at work and do some major preparation for P’s surgery next week. This week was the good week. Next week will be a challenge.

Last night we met with a couple we met through the support group our surgeon encouraged us to get involved in. They gave us an hour and a half of their precious family time so we could learn from their experience. Their a-dorable little almost 6 month old baby boy had a Coarctation of the Aorta (CoA) too. They were fantastic. They brought pictures of everything! They even showed us his scars from the surgery. It was so helpful to see what Pierson would look like immediately after surgery and what to expect when he’s hooked up to all those machines and monitors. They were so real about everything! It was fantastic! It’s one thing to hear things out of a medical professional’s mouth but it’s quite another to meet another family who has gone through it. They were honest about their emotions – it’s good to know that all the feelings we’ve been having are ok and normal. It’s also good to know that it’s ok to have a meltdown during all of this. We dread handing Pierson over the day of the surgery and it was good to know that they didn’t so much like that either! They were straight with us that this next week is pretty much going to suck – but it does get better. There is hope! Soon it will be over and life will be life again. It’s just great to know that there is light at the end of the tunnel… not just because it says so on the sheet of paper but because we’ve seen it with our own eyes and met people who have come out of it. Driving out of the parking lot after we met with them Jeff and I said almost simultaneously "That feels a lot better".

One of my friends who over the last 11 years of our friendship has constantly spoken truth into my life gave me some wise words about this valley we are walking through. "…when God made P he saw the kink and he knew it would happen. He knew that P would need surgery. But he didn't stop it. He let it form that way. He has a plan, though in the midst we would often like to avoid the pain of sanctification, but you are where you are because God wanted you here. He is not surprised by this news. His plan is in full motion. You and Jeff have an opportunity to teach P that God is healer, the great physician, and that he has gifted these doctors with gifts to heal and help. What a testimony. You and Jeff have an opportunity to show the doctors/nurses/and everyone else you could ever imagine and wonder, "Where did they come from?" to be a living, breathing testimony that God is bigger, he does as he pleases and you rest that his ways are your ways and his thoughts are not your thoughts and you show the world that God can use science to help heal and restore. Had this situation not happened, this "world" would have never existed for you, but new doors have been opened. Take them. Trust in God to lead. To heal. To transform. What a beautiful picture of taken a broken heart and making it heal and do what it needs to do. Much like God does with ours, transformation."

This "world" that we are in did not exist to us even 2 weeks ago. It’s a pretty interesting world and we’ve learned a lot of things. We didn’t even know what a CHD really was. We had never heard of Coarctation of the Aorta. Now I know some of you are thinking… how could Jane not know this, isn’t she in the medical field? Yes, I am, but my focus is geriatrics. I have no patients who had this because CHD kids didn’t live through childhood years ago. In this "world" we are in we are meeting some other really awesome Christian couples. It’s funny. I don’t know if as Christians we’re just more prone to fellowship or if you just can’t go through something like this and not be face to face with God or what. We want to be able to help other couples too. We want to raise P to know that God has made him fearfully and wonderfully and has an incredible purpose and a plan for him, heart surgery and all. God is actively working in the life of our little boy. We are walking where He wants us to right now. It’s scary but it’s where He wants us to be and we have to trust that. We are going to have some very hard days ahead but He will still be with us.

In other news, Jeff and I are both off work for a little while. With Jeff working in the family business taking some time off for P’s surgery (even in the peak of their busiest season) is fine, which is a huge blessing. I work for the greatest company in the world and I promise you my bosses are better than yours. I will be off on leave so I can focus on nothing but helping P get back to being a happy healthy little boy with a fully functioning heart for the next month. I was actually encouraged to do this. Not many people can say that about their employers. It’s a blessing knowing that my full time job for right now is to get Pierson better. What an incredible blessing. I know that this is His hand as well. We are truly blessed beyond measure.

We are getting ready for July 4. This weekend will mark a series of good days before our hard days begin next week. We are having some friends over to cook out July 4 and then we’ll all go watch fireworks. One of these aforementioned friends include Pierson’s beloved "girlfriend". He knows she’s coming over and is excited. "Mommy, when is B coming? I lub her!" His gf’s parents are amazing and have been praying with their daughter for God to heal Pierson’s heart. P’s best friend since before they were born, Jack has also been praying for God to heal Pierson’s heart. What must those sweet prayers of 2 and 3 year olds to heal their friend’s heart sound like to God’s ears? It must just be the sweetest song.

P and Jack at P's birthday party. It's blurry but I love this one of them!

P with his precious little love