We Have Arrived!

We made the trip up to Ann Arbor in about 8 hours today. Only two stops and no traffic. Thank you for all the prayers for safe travel. We did happen upon two accidents that we narrowly missed. One was a large object that went through someone's windshield, and another was an overturned semi on an off ramp moments after we exited. Here he is posing in front of the Con-way Freight headquarters located across the highway from our hotel. How cool to have a building named after you!

We're watching the All Star game now. Or rather, I'm watching the game now. Connie's been bowling in the hotel room and reading his Curious George Goes Bowling book. Tomorrow we plan to go to a nearby lake that has a beach, swimming area, splash ground and boat rentals in the morning and then bowling in the afternoon. If there's time, we're going to hit Pinball Pete's arcade for some skee ball. Thursday morning we report to U of M Congenital Heart Center promptly at 9am and have been told to expect to stay until 5pm. Connie will have numerous tests done including EKG, X-ray, echo, clinical exam with both a cardiology fellow and Dr. Ensing (cardiologist), pacemaker check, labs; and appointments with Drs. Bove and Bradley, and a member of the anesthesia team. When the nurse from the heart center called yesterday, she said that if all goes well, Connie should be inpatient for about a week. She said conduit changes usually spend five days, and the pacemaker will probably add two more days. Your continued prayers are so appreciated! We find strength in knowing God has a plan for our dear boy and while we have an amazing team caring for him, God is in control.

Getting Ready

We are now six days out from surgery and just three days from leaving town to head up to Michigan. We have been busy preparing for this trip and are pretty well ready to go. Here's what we've been up to: He knows why we are going to Michigan. He knows he's having heart surgery. We didn't go into a lot of detail, but basically have answered any and every question he's had about it. He wants to talk about it every day, seems to be looking forward to the trip and tells friends, family and neighbors the date and what he's having done, etc. He is most concerned that we will leave him. I have reassured him over and over that the only time we can't be with him is when he's in the O.R. and that's because the doctors and nurses are the only ones that need to be in there in order to keep it clean and safe. I told him Dr. Bove will be in there with him when we can't be, and that he'll be asleep the whole time. He is also worried his surgery is going to hurt. I explained that he'll be asleep for the whole surgery and won't feel anything, and that when he wakes up, if something is sore he can let us know and we can give him medicine to help with the pain. He has been saying he just doesn't understand how they get the heart open and he wonders what it will look like when it is open. I have hesitated to use the word cut because I don't want to scare him. I happened to see a hospital in Florida that recently did a live feed of a little girl's heart surgery and posted updates and pictures on their blog. I asked him if he wanted to see what a heart looked like during surgery and he said yes. I showed him the blog and he wasn't bothered by it, but also didn't want to look at it for very long. His other big concern seems to be "tubes". I think by this he means IV's and the ventilator. I don't even think he knows about or remembers chest tubes, which I've been told are the most painful part of recovery. We are praying that by the time the sedatives are lifted, he will already be extubated and we won't have to worry about him fighting the vent. He has been awfully cute with some things he's said lately. He was pretty restless in church last Sunday and Greg was kind of trapping him between his leg and the pew in front of us. Connie loudly proclaimed, "Dad, Stop! You're hurting my pacemaker." Of course that got some looks of pity from those around us and made Greg feel terrible. When we met with Dr. Bove at the reunion he heard him say that once we got that new conduit in there that he'd be hard to keep up with. Now every time he's moving slowly (getting in and out of the car in 105 degree heat, taking forever to get dressed, etc.) he says, "Mom, I'm just slow because my tube is too small and I need a new one. Once I get a new tube I'll be faster." His new favorite game in the pool is "Dunk the Doctor" and he and MK take turns sitting on the steps of the ladder waiting to fall in while the other throws balls at the side of the pool, trying to hit the target. They pretend they are Dr. Bove, Dr. Bradley, Dr. Bromberg and Nurse Colleen. It is pretty hilarious to watch! We wanted him to receive the sacrament of Anointing of the Sick before we left and we had some religious articles that will accompany him into the operating room that we wanted to have blessed. He'll be taking a rosary with Lourdes water inside, a guardian angel prayer card, and two medals. One is of the Sacred Heart of Jesus and one is of the patron saint of heart patients, St. John of God. We visited with Msgr. Callahan, who was the priest at SEAS when I was a young girl. It was partly due to his welcoming spirit that I decided to convert to Catholicism. We chatted for a bit and he got to know Connie and Mary Kathleen. He's been following Connie's story from the beginning and said countless prayers, I'm sure. Connie said he was scared the Anointing was going to hurt, but Msgr. reassured him. He's had it done about twice a year during mass at Assumption, but he was a little nervous this time. Msgr. prayed over him and Anointed him and then we left. We've also been trying to help MK deal with everything as well. She's a very anxious child to begin with so having a brother with a chronic illness has not been easy on her. And in order to help him find a little joy during his upcoming stay, he's been able to pick out some new toys and books to take to play with/read in the hospital. I'm sure that this, along with all the attention he's received from friends and family has made her start to feel a little left out and jealous. She's not typically like that, but she asked when we were leaving the rectory why she never gets Anointed and I think just the fact that Mom and Dad are going to be away from her for a time is a little unsettling for a seven year old. Karsten is, of course, too young to understand or anticipate what any of this means for him. I'm praying that regular FaceTime visits will be enough for him while we are gone. He adores Grandpa especially, so I'm hoping that the fact that Grandpa will be with him and he's going to have his same routines and be in his own house will help. It's Saturday afternoon and we're just about packed. We just have a few odds and ends to gather before we leave on Tuesday morning. We have opted to quarantine Conway until we leave, in hopes we can avoid any illness that would require postponing surgery. It's going to be a long few days at home! Please pray that he remains healthy and that his fears are relieved. We are asking that God give us what we need each day, and that Conway's story will give others hope and increase their faith. One thing Conway is requesting is to FaceTime people while he's in the hospital. Traveling for surgery is hard on everyone. Staying in town definitely has it's advantages as far as convenience, cost and support systems, but we feel that due to his complexity and history, U of M is the best place for him to receive care at this time. He has experience using Apple's FaceTime with grandparents and cousins and would like to use that tool while he's in the hospital as well. We think it would be a good distraction for him and help pass the time. If you have an iPhone/iPod/iPad and would be interested in talking to him, you can leave your contact info in the comment section or email it to me at becketeach@gmail.com.

We Got the Beat! A reunion for U of M patients with complex CHD's

We made an impromptu visit to Ann Arbor, MI this weekend. Don't worry! Conway is fine. We went for a reunion for University of Michigan Congenital Heart patients. I read about it online Thursday evening and Friday morning while the kids were at VBS, I coordinated with our contact at the Holiday Inn for a room and asked another parent to take over coaching duties for MK's softball game that night (Thanks, Pohlman's!). Right after I picked the kids up from VBS we loaded up for the 9 hour drive. Greg had work to do so I took them by myself. I'm sure if I'd had more time to plan, I would have talked myself out of it, but I was excited and running on adrenaline, I guess! Needless to say, we had a couple of traffic snafus on the way up, so the drive ended up being about 10 hours, but the kids were great the whole weekend and had so much fun. My thinking behind going was that it would be good for Connie to form some relationships with the doctors and staff in a non-threatening environment so that when we go next month for surgery he feels more comfortable. Also, I thought it wouldn't hurt for them to get to know him a little better when he's not sedated... to see him as a real little boy and to see a glimpse of his personality, hoping it would strengthen their desire to do their absolute best for him. We were not disappointed! We saw God's hand in little things the entire day. The sun was shining, the temps were in the 80's, the facility was amazingly clean, Karsten was good despite missing his nap-even after being up until 11 the night before, and the list goes on. Here are some of the best pictures from the event. Connie riding a pony. Normally not noteworthy, but this child was terrified prior to this day of riding anything! Turned out to be his favorite activity! It took him a while to climb to the top of this slide (sorry to the kids in line behind him!), but look at the joy on their faces as they slid down. Bubbles the clown made every kid a balloon animal. Conway chose a dog, MK a bunny and Karsten a giraffe. Showing off his new shirt The man of the hour, Dr. Bove. I wish I could have captured the look on his face when he realized who was approaching him. We had been waiting in a line for about 30 minutes, they had professional photographers, etc. You could tell the doctor was looking at everyone's nametags and trying to figure out who people were. He's done 10,000 surgeries since he's been at U of M, so he likely doesn't remember every case. I knew he wouldn't recognize Connie because he was only 2 the last time he saw him. When he read Conway's nametag, you could see the awe in his eyes. I'm not making this up. He looked up at me and beamed with joy. He shook his head as he uttered, "He looks amazing!" He was referring to the fact that he took such a hit neurologically after the first surgery and it was obvious to him that he had overcome so very much. That one look from the doctor made all the time in the car and the fuss of packing all worth it. It was like a reassurance for both him and me that miracles really do still happen, and Connie is one of them. The man on the right is Dr. Bradley, the electrophysiologist who was able to successfully ablate Connie's atrial flutter in 2009. You have no idea the peace that came over me when this man actually knew the date of Connie's upcoming surgery. It's almost a month away and he's not even a regular patient in their clinic! As soon as he saw us he remarked about how amazed he was that we made the trip and that he looked forward to seeing us again on the 13th of July. What a professional!! The doctor on the left is one of his trainees. Connie told Dr. Bradley that he wanted to be a boxer. Dr. Bradley agreed with me that he should stick to boxing on the XBox Kinect and keep up with bowling instead! Dr. Bradley and his team will handle the programming and initial monitoring of the new bi-ventricular pacemaker that Connie will be getting in July. They printed the pictures of the kids with their doctors and gave them out, along with paper frames the kids could color and keep as souvenirs. Connie apparently thought a 3D frame was a better idea! Karsten snuggling his new Bear Bear. We brought him a U of M bear back from our trip in November and it quickly became his lovey that he sleeps with. We decided we ought to get a back up. Another favorite memory is the Dunk a Doctor game. Connie was especially looking forward to this event and when he heard them announce Dr. Bradley as the doctor in the tank, he took off running! This man is so wonderful! He spotted Connie at the back of the line and pointed him out to his nurses. They started calling Conway's name until he came forward. They kindly explained to everyone he just butted that this was Connie's doctor and they wanted him to have a chance to dunk his own doctor. He gave it his best shot! On the third throw, he nailed it! Down went the doctor and the crowd went wild! I love the look he gave Connie here! Survival Flight even made a stop to show the kids their helicopter And what better way is there to end a perfect day than with a sno cone?! All in all, it was a great little weekend road trip, with lots of fun and memories had by everyone. Hopefully these happy times will help Connie be brave when he's faced with the not-so-happy hospital time coming up. On the drive we listened to his new Vacation Bible School music CD and one song is all about God being with you wherever you go and how God helps you to be strong and brave. I reminded him that God even goes to Michigan, and will help him be strong and brave for his surgery. Conway's surgeon, Dr. Bove, has been honored with an Endowed Professorship in Cardiac Surgery. This site tells more about it and this brief video gives a little insight into just what amazing things he has done over the course of his career to better the lives of children affected by congenital heart disease.

The Date is Set

I couldn't stand the suspense of not knowing so I caved and called Michigan today. I was transferred to Kim, Dr. Bove's secretary. They are an hour ahead so it was already 5pm there and she had shut down her computer for the day and was walking out the door. They are so wonderful there that she turned everything back on and looked in Dr. Bove's notes and saw that he has offered us July 13th for Connie's next surgery. That means that pre-op would be on Thursday, July 12th and Connie would be first case (and likely only case) for Dr. Bove on Friday, July 13th. I'm not superstitious, but I'm also not fond of the fact that his surgery will be on a Friday, the 13th. The good news about this date is that hopefully he'll be fully recovered by the time school starts in late August. The bad news is that he won't be able to attend Camp Rhythm, the heart camp sponsored by St. Louis Children's Hospital. This was to be his first year to go to mini-camp (day camp). Our tentative plan is for Connie, Greg and I to drive up on Tuesday, July 10th and take a day to get settled and check out local bowling venues in the A2 area (We promised Connie we'd bowl in Michigan) before pre-op testing begins on Thursday. We will have a room at the Holiday Inn near the University of Michigan until we can get a room at the Ronald McDonald House next to the hospital. Between the grandparents, I think we've got the other kids covered. Please keep us in your prayers as we prepare for this next step of Connie's journey. Here's the boy sporting his Dr. Bromberg fan club shirt ("When I grow up I'm gonna be a cardiologist.") and showing off his survivor hat and zipper scar.

Dr. Bove Agrees

Well, Dr. Bromberg was at SLCH on Weds for conference and he picked up all of Connie's records from his cath and other labs. He forwarded them on to Michigan for Dr. Bove's review. On Thursday, he got a note from Dr. Bove that he agreed that it was time to replace the conduit. How's that for fast?! Soon, we should be hearing from someone in scheduling at Mott and then we'll go from there. Greg was able to find an Ann Arbor hotel that was willing to barter some of his goodie boxes for a room. They even have 24 hour shuttle service to the hospital and are only three miles away! What a blessing that we don't have to worry about that huge added expense.

Congenital Heart Night at Busch Stadium

Connie was able to get in two naps Saturday before game time so he was ready to go! Unfortunately, the weather was very warm and our seats were directly in the late-day sun. He spent a few innings out near the concession stand in the shade, but after that was happy to be in the seats and clapping and participating. We sat right next to several heart friends including Averi, Maggie and Abbie Lynn. Averi and Maggie will be attending Camp Rhythm with Connie this summer and Averi will also be having open heart surgery very soon to replace her homograft. I'm so grateful that we have met so many wonderful families on this journey and that he'll grow up knowing he's not the only one battling this disease.

The game was rather boring, as the Cards were shut out 4-0 by the Phillies. The highlight of the evening was definitely getting to talk to Dr. Bromberg, his cardiologist. He was seated a few sections away with some other members of his office staff. We joked about how the echo technicians all draw straws when Connie is in the office because his anatomy is so challenging to view and measure.

I just love this one. It shows so clearly what a connection Dr. Bromberg has with our boy. Some doctors just talk to the parents. He always asks Connie questions and has fun with him. It's no wonder why he's Connie's favorite and why Connie has named Mercy Hospital, "Dr. Bromberg's Hospital."

Our next step, according to Dr. Bromberg, is to call his office tomorrow (Tues.) to confirm the receipt of his cath information from Friday and that they forward it on to Michigan for Dr. Bove's review. Then we wait to hear. Please pray that his surgery date will be soon, so that he has time to heal enough to still go to heart camp and that by the time school starts back up he will have no restrictions. We take comfort in knowing that God's timing will be perfect, but as parents we sure think we know what's best and have a hard time letting go and letting God.

We're Home

Conway was discharged a little after 5:00pm. We're so happy he didn't have to stay overnight. He's extremely upset that he isn't going bowling tonight, which was his wish. He also won't be able to swim for a week, which is a bummer given that pools open this weekend and it's going to be 98 degrees tomorrow! We're hoping he feels up to going to the Cardinal game tomorrow evening for Congenital Heart Night at Busch Stadium. His cardiologist will be there, too! How's that for a follow-up appointment?!

Cath Finished

Dr. Balzer just spoke with us and shared the video from the cath. He is still in the lab waiting for the blood thinners to wear off before removing the catheter. Results from todays test reflect what we saw on echo last Monday, meaning so far everyone is in agreement that we are at the point where surgical intervention is necessary. Now we will wait to hear from team in Michigan on timing. After they get Connie settled in the room he'll have to lay flat for 4-6 hours. Hopefully we'll be discharged by dinner time. Thank you for all the prayers! They are working! He remained calm, excited even, right up until about 10 min before the procedure began. He was crying when they took him into the cath lab. They tell us he won't remember it. I hope they are right.

Cath Tomorrow

I got a call from SLCH today saying that next week's cath schedule looks crazy busy so they want him in tomorrow! We leave at 5:30 and he's Dr. Balzer's first case. We feel so blessed that we were able to get Dr. Balzer after all, and some of our anxiety is relieved knowing that the same doctor who has done his other caths in St. Louis will again be the one doing it. They told us to plan on being admitted Friday night, but we're hoping it will just be a diagnostic cath and that we'll be discharged by dinner time. We'll update tomorrow during/after the procedure. Goodness knows we'll have plenty of time while he has to lay flat for six hours afterward! Pray for him to remain calm. When I tried talking to him about this coming up he started getting all panicky about the mask again. He is deathly afraid of having tubes or anything near his mouth. I think subconsciously he remembers things from infancy and that period of time when his oral aversion was so bad.

Surgery Needed and AHA Heart Walk

Well, our gut instincts were right. We have been noticing changes in Conway lately related to how much he is sleeping so we had an appointment in the middle of April where Dr. Bromberg was leaning toward thinking this was indicative of his RV-PA (right ventricle to pulmonary artery) conduit needing to be replaced to a larger size, but wanted to give it another month to rule out the possibility of Connie just having a virus or something. We went back today for an echo and sure enough, his RV pressures have gone from 66% in late February to well over 80%. Anything over 75% means that the conduit is too stenotic, or narrowed. He's had this gortex conduit since he was 5 months old, so as his heart has grown, the conduit has stretched and become obstructed. We knew it would have to be changed at some point. Now we're just crossing our fingers that Dr. Bove (his surgeon in Michigan) will be able to use a large enough replacement that it will last Conway a very long time. The thought is also that while he is in surgery he will have an additional ventricular lead wire placed and have his pacemaker generator changed out to a new, upgraded model called a bi-ventricular pacemaker. That would give us more options in the future regarding the mode in which he is paced. When he was younger, he had to be changed to VVIR mode from the typical DDD mode because of his high atrial rates. Today he was switched back to DDD mode to see if that impacts his RV pressures, but we aren't holding our breath that doing that will have any positive effect. The good news is that his function is still good! Surgeons can fix obstruction, they can't fix function, or the squeeze of the heart muscle. The next step will be to have a diagnostic cardiac cath done here in St. Louis and send that info, along with his clinical reports and latest echo to Michigan for Dr. Bove's evaluation. If he agrees that surgery is necessary at this time, we will wait for his team to schedule it and have it done at C.S. Mott Children's Hospital at the University of Michigan, Ann Arbor, where his previous surgeries have been performed. We are hoping to have it done soon, so that he has the whole summer to recover and will be ready to start Primary (kindergarten) in August. We have given the okay to have the cath done by another doctor at Children's besides Dr. Balzer. The reason being is this is purely diagnostic in nature and no interventions will be attempted and we'd get in sooner. We may have to wait weeks to get an appointment scheduled with Dr. Balzer so it would be best just to move forward with the earliest possible date. The American Heart Association Heart Walk was held Saturday at Busch Stadium and Conway had a special treat this year. He got to walk with his heart buddy, Grant, the whole time. He and Grant have the same structural defects and have had a very similar surgical path. Both have pacemakers, both traveled for surgery as infants, etc. They are only 6 months apart and our hope is that they become life-long friends on this journey. They'll be able to confide in someone that understands what it is like to have heart problems. Here's a picture of the two of them comparing their medical alert ID bracelets.

And here they are posing for the camera

Connie and the girls also got their photo snapped with the SLU cheerleaders and the Billiken. Maybe he'll go there just like his Mommy, Daddy, Grandpa Beckemeier and Uncle Geoff!

We'll update again after we get a date for the cath. Thanks for keeping us in your prayers as we embark on this next step of Conway's heart journey.

Results

After a chest xray, exam and nice long chat with the good doctor, we have settled on taking another, closer look in a month. This sleeping more thing has only been going on for 1.5 weeks, so we want to wait a month and see if this is a sustained issue, or could possibly some random virus or have another cause besides the heart. This is probably the beginning of him becoming symptomatic due to the stenosis in the conduit. If he's still sleepier this time next month, Dr. Bromberg will do an echo and likely send him for a cath here in St. Louis and then send the info to Dr. Bove in Michigan for his opinion on timing of surgery to replace the conduit. He said things could go quickly so that hopefully he'd be fully recovered and able to start kindergarten with no restrictions.

Oral Surgery Follow-Up and School Update

Conway met with his oral surgeon today to make sure his mouth healed properly and to discuss the biopsy results from the mass that was removed. Thankfully, it was benign and his mouth looks great! Both boys came and were very well behaved so we made a trip to the cafe for jalapeno chips and gatorade.

On the school front, things didn't go as we'd hoped at the kindergarten screening back in February so he's been invited back for a rescreening mid-April. We are confident that wherever this boy ends up for kindergarten (if he even goes to Kdg) will be exactly where the Lord wants him to be and that God has great things in store for him. We are praying for God to show us His will and trust that while it may not be our will, it will be what is best for our son.

Thank you for your continued prayers. We are so blessed to have you in our lives!

p.s. Conway can now pump himself on the swing!

Labs

Not really updating this time to fill everyone in, but more for our own records. Connie had labs drawn yesterday and his BMP was normal and pro BNP elevated at 677 (100 is upper limits of normal). While this may seem high, his trend continues to go down so we are taking this as a good sign. His levels have decreased 10 fold since his mitral repair in 2009.

Back to Normal

Connie stayed home yesterday and was pretty close to normal. He ended up getting one dose of ibuprofen around lunch and looked a little blotchy faced all day but other than that was himself. Today he went to school and has been eating his normal diet of hot sauce, jalapenos and ice water! We follow up with the oral surgeon in three weeks. Thanks again for the thoughts and prayers!

We're home

First, you need to read the next post, then jump back up here.

We arrived home at about 6:40pm after his 30 min. surgery. You know our Connie, he does nothing by the book. Right after they brought us the discharge papers to sign just before 3pm, he got lethargic and limp and wouldn't respond to his name. He had been up, alert, talkative and happily drinking slushies for an hour and then this happened. It was alarming for sure. The nurse happened to be in the room when it took place because we had just called for help with getting him up for the bathroom (still had IV). She was calm, but immediately called for a doctor, which got me a little worried. His anesthesiologist was right outside the door and came in to observe. They hooked him back up and checked his vitals, which were normal. He just could not maintain any level of alertness. I later described the episode to cardiology and they think it could have been a vasovagal syncope type of thing (brief fainting spell). He took a decent nap afterward and then once we were discharged, we headed straight for the hospital cafeteria, where he'd been begging to go all day. All he was allowed was soft foods but he's not crazy about puddings and such. We let him get some salami and juice and sat down to enjoy. Moments later he vomited all three slushies! On the way home he got sick again and did so again following his bath. We gave him half a percocet at bedtime in hopes that when his local wears off he won't hurt too badly. He'll stay home tomorrow, mainly so we can make sure some food stays down. If he's doing well he'll go back to school on Thurs.

Thank you for your prayers today! They mean a lot.

Surgery Day

Conway's oral surgeon just came back and said all went well. He was able to save the front baby teeth and work around them so that's great. He gave us the tooth he pulled out so Conway can get a visit from the Tooth Fairy tonight! We will go back for a follow up in three weeks. He said there will be some swelling and soreness, but they will numb it which should last until bedtime and then he can have some percocet tonight to help him sleep. This was the first procedure he's had (and he's had many) where he's been scared beforehand. He was scared mainly of the mask they use to give the gas. This puzzles me since he uses a mask at home for his nebulizer breathing treatments. He wanted us to go back with him and some hospitals allow that, but not Mercy :( he did get Versed beforehand and it did knock him for a loop, but it didn't make him silly and goofy like it's done in the past. There was definitely still a somber mood in the room. Now I just hope and pray he won't need anything else medical for a good, long while. Thanks for the prayers. We'll keep you posted after we get to see him.

The Birthday Boy

Connie thoroughly enjoyed his day. And to make sure he made the most of it, he got up at 5am! We had a mini party opening gifts this morning at 6am on our bed! Soon after he woke he wanted his favorite breakfast, McDonald's. Then he spent time watching bowling videos on YouTube and waiting patiently for 2pm. That's when his cousins Liam and Brooklyn and Aunt Mary (godmother) arrived and went to Brunswick with us for bowling and arcade games. He got several spares today (thanks to the ramp) and probably will require some PT for his shoulder given all the skee balls he threw. When we returned home, Grandma and Grandpa George and Uncle Terry (godfather), Aunt Celeste and more cousins Anna and Keegan were waiting to celebrate with us and share in the bowling birthday cake. He opened his presents, we sang, ate and he played. He just climbed into bed a very happy boy! Thank you to everyone who shared in this day with us, both in person or in prayer. You all mean so much to us.

Here are some pics from today.

Five Years Ago

...a beautiful baby boy joined our family. He gave us a little scare during delivery as there was some evidence of meconium when they broke my water. They brought in the NICU team to check him over. They gave him a good suctioning and said he was great. He was gone for his bath for what I believed to be a very long time, but we were more annoyed than worried. Before the nurse brought him back, she came in to deliver the news that they heard a heart murmur, but that it was very common and nothing to worry about. We had no reason to believe anything was wrong. We enjoyed the next two days with our new addition, so grateful for the smooth delivery and the fact that he was born at term (ON his due date, just like Mary Kathleen!) and was a very hearty 9 lbs. 2 oz. (also just like his sister, Mary Kathleen!). Here are some photo memories from that day:

Pre-Op Check-Up

Well, Conway wasn't due back to the cardiologist until mid to late March, but since he's scheduled to have this oral surgery on 3/6, he was required to get a full cardiac work-up. His appointment was today and here's the news we've got so far:
1) He looks great. His stamina and endurance are unchanged and we have no new concerns with that. He never complains of fatigue or chest pains so that is good.
2) His pacemaker is AWESOME! He has about 5.5 years of battery life left on it and his leads look good.
3) He had an echo and we don't have the complete report yet as it wasn't available for the doctor to read yet. The doctor did come in the room a few times during the echo and remarked that the tech told him things looked pretty unchanged. His gradient across the valve is higher, but it might just be an issue of the angle the measurements were taken. He's going to compare it to his last two and get back with us.
4) We were supposed to head over to meet with the anesthesiologist after the cardiology appointment, but the wonderful Dr. Bromberg made a phone call and spoke with the doc himself and was able to save us the trip. So, if the echo looks unchanged and Dr. Bromberg feels Conway is safe to have surgery on 3/6, then he will.

The Children's Heart Foundation is having a trivia night on 3/10 to raise funds for CHD research. We will be going and sitting at Dr. Bromberg's table! If you are interested in getting a table let me know and I'll pass on the details. There is also a CHD Night at Busch Stadium at the end of May. I believe the Cardinals are also having some sort of pre-game ceremony for CHD survivors as well. Tickets go on sale soon and a portion of the proceeds go the the Children's Heart Foundation. Again, let me know if this is something you'd like to join us for.

While we certainly wouldn't wish complex heart disease on anyone or their child, we are so grateful and forever changed by the relationships we've made on this journey. We know God has placed so many special people in our path and we thank Him every day for each and every one of them and each and every one of you!

Crazy Times and Prayer Request

Okay, prayer warriors! We need you to storm heaven again. Life has been pretty hairy here lately and is about to get even more so. I am sure things could be much worse. I remind myself that we are living life at home and not cooped up in some hospital so for that especially I am thankful.

Here are our specific needs for you to keep in mind:
1) Kindergarten Screening. Conway goes tomorrow (Saturday) morning for testing to see if he qualifies for entrance into a private school. We are especially nervous given his recent tears over attending said school. I am pretty sure he might think he's going to be switching schools tomorrow and no matter how many ways we try to explain it, he is virtually inconsolable on the issue. Please pray that God calms him so that he can do his best and showcase the gifts God gave him.

2) Oral surgery and pre-op appointments. We got several calls today regarding his upcoming oral surgery scheduled for 3/6. We were told that the anesthesiologist wants to examine him and also needs clearance from his cardiologist. While I appreciate their thoroughness I am disappointed that they won't take our card's word. Rather, they are requiring a full cardiac work-up prior to the surgery. Conway was just seen in Sept. and cardiology assured them that nothing major happens over the course of a few months. Don't get me wrong, I appreciate the fact that he needs to be his best before going under, but I also am upset that this is turning into such an ordeal. He was put under for his broken arm surgery at the same hospital in summer of 2010 without all this fanfare. And at that point, he was less than a year out from major open heart surgery. He's been healthy now for 2.5 years so I'm puzzled as to why everyone's so alarmed. Please pray that the appointments go smoothly, efficiently and that there are no surprises. It also wouldn't hurt if we could be so lucky as to get into cardiology and anesthesiology on the same day!

3) My knee. I blew out my ACL and have to have an ACL reconstruction on 2/16. Greg and I are getting more anxious by the day about what my limitations will be as far as taking care of the house and kids. My doctor says to expect to be out of work for 4 weeks while I'm on crutches. Trying to fit in PT appointments with our already busy schedules seems daunting! Not to mention, Greg is spread so thin right now we don't see how he can take on another task (caring for me, the gimp).

4) My grandma. Evangeline Veronica O'Leary passed on 2/3 with her family by her side. She was almost 98 and really enjoyed Conway. Conway knew that he and great-grandma shared a special bond; they'd both had open heart surgery. They had matching zipper scars on their chests. This last year or so she's been battling painful injuries and broken bones and been in and out of hospitals and rehab nursing homes trying to get better. Most young children are apprehensive or afraid of visiting such places, especially when older adults try to talk to them. Not our Conway! He genuinely greeted every patient he passed and asked to go visiting quite often. Conway doesn't grasp the fact that we're not going to have those opportunities any more. Today we went to her apartment bldg. to celebrate her life with the other seniors she befriended and he kept asking to go up the elevator to her apartment to see her. He knows she lives with Jesus now, and that she's all better, but I don't think he really gets it. He still prays every night for her and that her bones will heal and she'll get well enough to go home. We just keep telling him she IS home now, but her home is in heaven.

As I said, these "problems" are so very minor compared with some. We are so grateful to all of you who still keep up with us and our journey. We hope and pray that God continues to reveal himself to us through your thoughts and prayers.

January 2012 Update

Some of the photos I promised...
MK had her first week of school at the Academy of the Sacred Heart. It seems to be the perfect fit for her and the answer to our prayers! Her teacher sent several pics. Here is one from recess.


And Conway is doing much better with keeping his glasses on. He had just started getting used to them and the frame broke! We got them fixed and he's back to looking sharp!


In mid-December he sang in Assumption Preschool's Christmas program. Even though he only attends in the afternoons most days and the rehearsals were in the mornings, he learned all they lyrics well. He LOVES to sing. Here he is in his dressy duds.


We also attended school's Breakfast with Santa for the obligatory photo with the jolly fellow. Karsten wanted nothing to do with him (or, as I've mentioned before, ANYone else besides parents and grandparents), but the kids had fun. Conway told Santa what he wanted for Christmas and then as soon as he got down off the stage he asked me where the table tennis set was. He actually thought it would appear then and there. I had to explain to him that there was a waiting period and it wouldn't be until Christmas morning that he'd be seeing the present.


...and of course there was Christmas morning. Conway got is still big into bowling so that was the prevailing theme yet again for him. He got a new piggy bank,

and his favorite, an automatic return bowling lane!


As always, thanks for looking in! We are so blessed to have so many people thinking of and praying for us and our children.

End of Year Update

With 2011 coming to a close I thought I'd take a moment to fill you in on our dear Connie and the rest of the family. He's healthy as of this moment (actually the healthiest in the family---half the others have strep!) and has been having a pretty good run. He was just prescribed glasses again... he had them for a brief time when he was very young. He looks just dashing in them. He knows he can take them off at night and if he's napping so he asks for a nap constantly now to try to get some time sans specs. Of course he's not really falling asleep for the most part, little devil.

He had a fabulous Christmas and absolutely LOVES his automatic bowling lane and table tennis set.

He saw his oral surgeon again today and the date was set for the extraction of that supernumerary tooth. It's going to come out on March 6, 2012. We'll go back to see him again in late Feb. for a physical and to meet with the anesthesia team, but it should be pretty straightforward. Please pray that he will be in top health when the time rolls around for this procedure and that all goes smoothly.

Mary Kathleen has been having daily migraines and stomach issues which we think are related to some anxiety-type issues. She's quite the little worrier and is easily overwhelmed. Please say some prayers for her as she prepares to transition to a new school in January. It is one where we hope she will be able to find her voice.

Karsten is a joy, as usual. He still dislikes most people that are not in his immediate family and grandparents. God help the little old ladies that smile at him in the check-out line. He scowls at them until they look away! He's been singing his ABC's and other nursery rhymes and LOVES to throw his food down to the dog.

Cece is starting her final semester in elementary school. She's a great student, as evidenced by her latest report card. She volunteers to serve at mass and is still involved in the girl scouts.

Greg's business is undergoing some big changes and we are both filled with some anxiety over the future. Please keep him in your prayers at this time, that he would continue to seek the will of the Lord in his decisions, and that he be able to turn over any fears whenever they present themselves.

I promise I'll get some pictures up soon! Thanks for thinking of us!

Ann Arbor Visit

Conway, Mookie, my dad and I flew to Ann Arbor for a quick weekend getaway to tour the new C.S. Mott Children's Hospital. We were invited to the Creator's Preview since Mary Kathleen made a clay tile that was used to decorate the interior of the new building. Her bunny tile that she made in Conway's honor back in 2007 is at the check in desk of the Michigan Congenital Heart Center. To access the photos, copy and paste this link into your browser. From some reason it's not letting me link it. http://www1.snapfish.com/snapfish/thumbnailshare/AlbumID=3842718012/a=97017826_97017826/otsc=SHR/otsi=SALBlink/COBRAND_NAME=snapfish/ It was the first time for the kids to fly that they remember. The last time was that 2007 surgery trip.

The kids really enjoyed the trip, especially going into the O.R. and playing with the sink the surgeons use to scrub in. They got to see the Physical Therapy gym, indoor playground, Ronald McDonald house, therapy dogs and so much more. One floor had a life-sized game of "Operation" and Mookie was quite skilled at removing the pieces without making the buzzer go off!

It was nice to go for a good reason this time and not a scary one. We didn't even go near the old hospital building. I really didn't want to conjure up any of those old feelings and I figured it was a time to celebrate and not relive the pain of the past. Hopefully the next time we have to go for a surgery we'll have this experience to look back on and go with positive feelings.

Extra tooth update

Conway had a follow up with the oral surgeon today. Dr. Noble repeated his x-ray and determined that it is time to get that tooth out. We go back in a month and will probably schedule the outpatient procedure for sometime over Christmas break. I wish it didn't have to happen at all, but feel reassured that all will be well. The doctor said that by day two post op he should be back to himself and he may even be able to save the two front baby teeth.

6 Month Cardiology Check-Up

Time has flown by. I can't believe it's been six months since we last saw our friends at Mercy Children's Heart Center. The whole staff couldn't get over how great Connie looked and how grown up he appears now. It must be the spiky, gelled hair-do. Conway went in late Thursday afternoon after waiting all week. I had told him about the appointment on the Sunday prior and he squealed with delight and asked/reminded me every day leading up about the visit. He happily went through all the assessments and answered questions when asked. It's fun to see them involve him more in his care now that he's older. I can only imagine how I'll feel when he's a teenager and they'll discuss it all with him and I'll merely be a spectator.

His pacemaker report showed that he's got about six years of battery life left on his current generator. This is great news! I am not sure without going back and looking at old posts, but I think the last time this was checked it showed 4.5 years. That means it's added energy! Dr. Bromberg commented that he's never seen one go down this slowly before. How awesome is that?!

After his echo was reviewed, we learned that there has been no change since the last one. He still has leaky valves and obstruction/narrowing through the RV-PA conduit, but it hasn't worsened and it's well tolerated at this point (no RV or LV dilation, no symptoms). His tricuspid valve is the leakiest, but since his anatomy is so weird, it's actually in the pulmonary circulation and therefore doesn't affect his heart function much. The trouble with it being in the pulmonary circulation is that his conduit is obstructed as well. In essence, he's pumping against obstruction AND the blood is regurgitating back through the leaky valve, further limiting flow into the lungs and creating more work for his RV.

At this point, we are barely increasing his two heart meds, Enalapril and Aldactizide (just to keep the dose accurate for his current weight). We'd like to eventually take him off of the diuretic since we're not convinced he needs it, but the last time we tried that he gained a few pounds rather quickly due to water retention. Needless to say it's not worth it to us to risk that again. Why mess with it if it's working, right?! We'll send in a pacer check over the phone again in three months and he'll be seen again in the office in 6 mos just to keep an eye on that conduit. Maybe Connie will be one of those lucky kids whose conduit that was placed in infancy lasts until he's 8 or 10 years old. Wouldn't that be amazing? We were first told that it would last him anywhere from 3 months to 3 years. It's already been 4 years and Dr. Bromberg told us it could be YEARS before it needs replacing.

We went over lots of issues, including development and diet. Dr. Bromberg is amazed at his speech/language and cognitive abilities given what he's been through. Connie was disappointed to hear that he needs to lay off the hot sauce, but he's been a trooper about it and hasn't had a drop since the appointment because "Dr. Bromberg said too much hot sauce is not good for my heart." (it's loaded with sodium... plus, it's just weird for a kid to eat hot sauce with every meal/snack).

Thanks to everyone who continues to pray for our boy. He brings us such joy (most of the time) and is a living testament to God's grace, mercy and miraculous power! We are so grateful he is doing so well today and ask for prayers for continued good health and happiness.