"For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
--Jeremiah 29:11

Sunday, February 23, 2014

BNP Results

The doctor emailed late last week with results from Connie's lab work. His pro-BNP, the test which measures heart failure, was elevated.  Normal is below 124 and Connie's was 180.  Last summer his BNP was 18.6, so on the surface this looks like a concerning development.  However, given the exam and echo results the doctor is not worried.  He also discovered that these two labs were slight variations, so the numbers aren't comparable, unfortunately.  There are three forms of BNP tests and different laboratories draw different tests by default apparently.  The more reliable test in the field today is the pro-BNP, which is what he had drawn last week.  Bottom line is we will check this level again in three months and if it continues to rise above 180, we will likely make changes (go back on meds or something), but at least we will be able to compare apples to apples.

Monday, February 17, 2014

Great Report

We braved the icy roads (which weren't very bad by 9:45am) to make the trip to Mercy and see our favorite cardiologist.  Everyone was so happy to see him and couldn't get over how much he'd grown.  Seriously, like four people in the office remarked about how old and tall he looked.  After he got weighed and measured, it was official.  He's grown 7 (!) inches in 18 months!

Nurse Kelly did his vitals and caught up with him on what he's been feeling like.  He said P.E. is hard and that he gets tired, but that is nothing new.  I actually think he is more tired from his physical/muscle delays and weakness than he is from a cardiac standpoint. 

Connie waited patiently to get called for his echo. Here he was practicing taking "deep breaths" for the doctor.

He had his echo and had the added bonus of having his echo analyzed by an echo tech student along with Dr. Bromberg.  Doctor told the student that if he could read Connie's, he could read any echo!





Next up was the doctor visit.  He was getting a little squirmy and bored by this point, but was friendly as usual.

The doctor was pleased with his unchanged echo and thinks he looks great.  He ordered some lab work to check his BNP level just to be sure it isn't creeping back up now that we're off of the Enalapril.  He said to stay off of it for now and he'll see us again this summer just so we can get on a yearly summer visit schedule.  He's going the last Monday in July.We didn't do a pacemaker check this time since we just sent in a reading in early January, but we'll continue doing that every three months and at the July appointment he will interrogate again.

We went downstairs for the blood draw and our superstar didn't even flinch.  He is really growing up! In the past, he has always sat on my lap for blood work but not this time.  He just hopped up in the chair and rolled up his sleeve!
We'll update when we get results, but are pretty ecstatic that once again, God has blessed us with a wonderful report and our Connie's heart keeps on beating strong.  Thank you for your prayers!

Sunday, February 16, 2014

Cardiology Appointment Tomorrow

I just realized how very long it has been since I've posted an update on here.  I guess posting so many quickie updates on Facebook really makes this almost seem redundant.  That said, I'll try to recap the past few months before asking for prayers for Connie's upcoming cardiology visit.
Waiting for a turn to use the carving knife

School is going well for all the kids.  After Christmas, Connie seemed to have some issues with getting back into routines and maintaining focus, but that seems to have improved slightly.  It is hard when every week has either or snow day, early release due to snow, holiday or faculty meeting scheduled. MK earned straight A's and won the 3rd grade spelling bee.  She finished in 2nd place in the school-wide bee.  I was told by several colleagues and administrators that her presence was really quite impressive, especially for her age.  Confidence is something she has really had to work on, so this was an amazing feat for her.  At the end of February, we will once again have the opportunity for parent teacher conferences, but in these conferences, the meeting not only includes the student, but is led by the student.  This will be the first time Conway will participate in such a way.  It will be interesting to see and hear his take on his learning and how he is doing at school. Speaking of snow, here they are enjoying the first snow day of the season.  Snow has got to be such a frequent occurrence this year, they don't even ask to go play in it anymore :)
thrill seekers!

Karsten happily playing in snow


Connie recently started swimming lessons with D.A.S.A. He gets 1:1 lessons from OT students at Wash U. with a physical therapist supervising.  We're hoping it will be good to strengthen his core muscles, in a fun way.

Conway joined the cub scouts this past fall and is a Tiger Cub.  He will soon move up to the rank of Wolf.  He enjoys doing things with his den and has participated in a lot of events already, such as Pinewood Derby, family camping,  seeing a professional hockey game, raking and composting for the city, and much more.  One thing I love about his scouting experience is the religious aspect of it.  His den and pack take every opportunity to enhance the program for the boys by giving them the chance to earn religious awards and learn as much as they can about saints and their faith. 

Connie and Daddy at the Science Center with scouts

Working together on Pinewood Derby car


A new heart parent support group has merged with our existing one here in StL.  It is called Mended Little Hearts.  I have been attending the meetings and Connie and some of his camp buddies have come along to a few.  We're told that the parents of young babies, the ones in the throws of heart disease, really gain hope from seeing the older kids doing so well.  During Congenital Heart Defect Awareness Week, his school had a "wear red for awareness" day.  Connie was asked to read facts and figures about congenital heart disease over the school's PA system, and money raised during upcoming Mission Day will go to support research grants given by the Children's Heart Foundation
Sporting his red for Heart Disease Awareness Day at school



MK is playing volleyball and tennis right now.  Karsten started gymnastics through the parks and rec department.  They are all having a good time and learning a lot.  Piano fell by the wayside, unfortunately.  It was just too hard to make the drive back out to O'Fallon every week in traffic, especially considering the kids weren't practicing. Celeste is playing club volleyball and busy with scouts and band.


Baby Frances is growing like a weed.  She is 10 months of pure joy.  Literally the happiest, most content baby ever known (to us, anyway).  She is pulling up now and it won't be long before she is out climbing on the swingset with the rest of the kids (if this winter ever ends!)!
Crazy driver!

10 months :)






Now that you are somewhat up to speed, we are asking for prayers for Conway as tomorrow is his check up with the cardiologist.  The plan is to do an echo, pacemaker check, etc.-a full work up.  He was not due to go back in until late March, but in November the cost of his heart medicine went from $20/month to $687/month so his doctor wanted to see if he could do without it.  He said he would do a 2 month trial off of the drug and then look him over to see if he could stay off of it or need to be put back on it.  We are actually feeling like a check up will help to reassure us because the last three days he has put himself to bed at least 1/2 hour early and one day even took a three hour nap.  Unusually tired is never a good sign for a heart kid!







Wednesday, August 21, 2013

1st Grade!

 Look who photobombed this pic. Silly Karsten!
 No more peter pan collar for my big girl this year. She's growing up so fast! PE shoes are a size 5.5 Women's!
Today is the first day of 1st Grade for our boy!  Mookie is starting 3rd this year and is so thrilled to have the teacher she wanted and be in class with three of her best friends.  Conway is happy that his best friend is in his class, but not very excited about the start of school because, "There's no rest time in first grade!" I told him I'd have him come down and explain to my 4 yr old class the benefits of it since none of them seem to want to rest :)  I have met with his new teachers and nurse and they are all up to speed with his current health status. 


We still have not gotten the results of the holter monitor and I have been so busy with the move and getting settled here that I have not even gotten his disposable cameras from Camp Rhythm developed yet! I am behind and the school year is just beginning. This is not a good sign!  He loved camp again and even briefly made an appearance in a news story about it.

We are going to a meeting tonight to learn more about Cub Scouts and see if that is an activity that would interest Connie.  I think it would be good for him since it is not necessarily athletic and will give him something to do besides watch TV/play Xbox.  He is so hard to get up and get moving and it is hard to tell if it is just the way he is or if there is a reason for it.  Unless you take him to a bowling alley or putt putt course/driving range, he doesn't want to get off the couch (except to jump on/off it and wrestle on it with Karsten).  He is still taking piano lessons and seems to enjoy them.  He says he wants to play tennis like Mookie, but I don't think he is physically ready yet.  His coordination and strength are still pretty immature.

He continued with his occupational therapy this summer.  His therapist doesn't travel this far east so they were going to assign a new therapist.  We thought it might be time with the start of school to give him a little break and see how he adjusts to a new classroom and schedule before adding more to his plate.  He has been napping most afternoons if we go anywhere in the car and is probably going to be tired after a full day of school.

And not to leave out Karsten, he started preschool last Thursday and likes it. he cried briefly the second day, but seems to adjust pretty easily to new situations.  
Baby Frances is the happiest baby ever and is our joy.  She is beginning to roll over and screech like a pterodactyl. We just can't get enough of her!
We just had some photos taken and this was the best we could get of everyone!




Monday, July 29, 2013

General Update

No earth shattering news in this update. It is more of a post for our own records but you are welcome to read and stay in the loop.

Connie has been generally well this summer but I have had a nagging feeling he's a bit off for about the past month. He is sleeping more, eating less, whining more, playing less... just not himself. We have seen this in the past when his heart is out of rhythm so we called the cardiologist to see if he'd take a look. I know when Greg notices a difference it isn't just my imagination. We went in last Thursday for a pacer interrogation, chest x-ray and exam. His heart checked out perfectly. Dr. Bromberg understood our concerns and patiently explained that Connie is very stable right now, as hard as it is to believe, and we should expect him to remain that way. Seems tough when you are so connected to the rest of the "heart world" via social media and there are a lot of kiddos struggling right now. He urged us to see the pediatrician for some lab work and another exam to test for a possible viral infection of some sort. He ended up getting a very bad reaction (again) to a mosquito bite Thursday afternoon so the doctor wanted to take a look at him anyway. His left foot and leg swelled so big he couldn't put a shoe on or walk at all on Friday. That little bite earned him 10 days of antibiotics and 5 days of steroids. We got the lab results yesterday and they were all normal. They even checked a BNP at Dr. Bromberg's request and it was the lowest it has ever been recorded in him (18.6)! BNP is the test that measures heart failure. When he needed his mitral valve repaired it was over 7000 and after his last surgery, I believe the lowest it got was around 200-400. So this definitely seems to be a big improvement. His heart size on x-ray was also improved compared to the April 2012 film. It is now considered normal size.  I will be posting about Camp Rhythm very soon as it begins this Wednesday. He is looking forward to it. We are moving on Thursday so there hasn't been much time this summer to post pics lately. We have a few cute ones from recent boat rides on the Mississippi and Illinois Rivers. He loves swimming and tubing, but I think his favorite activity out there is napping in the cabin as the boat sways. 

**Updated 7/30/13: Dr. Bromberg emailed after getting the lab results from Dr. Davis and says he wants Connie to wear a holter monitor and get out a play quite a bit with the monitor on.  When he was interrogating the device in his office last week, he noticed that the unit was picking up "artifact" any time Connie would stretch or move his arms.  It could be that when he is running or very active that the pacemaker is sensing extra beats and getting out of synchrony.  Generally they would test this in the office using a treadmill but Connie is too small for theirs so we will wear a holter and take him to the driving range, outside to ride scooters, to the park and anything else we can find for him to enjoy that is active.  So, we will do this test next week sometime and share the results when we get them.  This should not be a big deal, just some tweaking might be necessary.  He will still be able to have both ventricles paced, but may go back to the old mode he was in prior to the generator replacement last August.

Friday, July 12, 2013

Blessing in Disguise

This post refers to the pacemaker lead issue. I'll try to keep it very simple. While I have a rather firm grasp on most things heart related, this is one area where I still feel very inadequate and out of my league. Electrophysiologists must be about the smartest people on earth.

We suspected Connie had a damaged atrial lead following his July 1st pacemaker
transmission.  This past weekend we were at a birthday party and before anyone saw the warning sign, Connie had touched a plasma tube. They can cause electrical interference and make it so implanted devices get reset to factory settings or fail to work properly. Conway instantly received a shock down his arm (likely from his metal medic alert bracelet). He cried and was pretty shaken up for a few minutes. We notified his doctor who told us to check his heart rate and go ahead and send another transmission. He let me know Connie was okay, but the pacer was still acting up and he was going to have a Medtronic field rep take a look. They decided that there was an issue with his settings and so yesterday we went in and had it reprogrammed. Basically Connie has been rebooted and our doctor feels confident that the trouble he was seeing was indeed this sensing issue and not a fractured lead!!! He said to go on our way and we'll recheck it in three months. We are thrilled that it seems the threat of possible O.R. time in the forseeable future is now gone! Our brilliant doctor may not have been able to make this discovery without this unfortunate incident so we feel this has been a silver lining of sorts and a blessing in disguise.

As always, thanks for keeping up with us and keeping little man in your prayers. We have an AWESOME God who is always by our side.


Tuesday, July 2, 2013

Multiple Updates

Conway is having a fun summer.  He loves swimming and is quite the little fish.  Poor kid is allergic to most sunscreen but we have found some for sensitive skin that he does well with.  He has become addicted to watching Woody Woodpecker on Netflix.  It is funny to see him enjoy some of the same characters I remember from my childhood.  He attended a three day golf camp earlier this summer and liked it a lot.  A fellow heart mama had some youth clubs she wasn't using anymore and she gave them to him so now he's got something to take out to the driving range or pitch and putt course.   This month he is going to a gymnastics camp for a couple of days and then to the highly anticipated heart camp, Camp Rhythm.  He adores Baby Frances and of all the kids, he is the most loving and gives her the most attention.  And she just lights up when he talks to her.  The only problem is he sometimes needs reminders about being gentle and giving her a little space.  He especially loves to tickle her... when she's eating or sleeping!  He's been reading to her some and she just stares at him and laughs intermittently.  He had a check up at the dentist and no cavities this time!  He was very brave about the x-ray, too.  I think it is so scary for him because it causes a flare up of  PTSD from his early months in patient and all the things that were forced into his mouth. 

We spent a night in Kansas City at the Great Wolf Lodge, an indoor waterpark.  We figured it was ideal considering we have the new baby who shouldn't be out in the sun for long periods and for Connie who tires more easily swimming and might need to nap.  He was the first one "done" swimming both days, but he did very well climbing three flights of stairs numerous times to do the water slides. 

We also enjoyed a recent trip to the Magic House courtesy of the Missouri chapter of the Congenital Heart Foundation.  The heart families had the whole place to ourselves!  Connie loved the vacuum tubes the most.

Yesterday marked three months since his last cardiology check up and pacer interrogation.  We typically have the pacemaker evaluated quarterly via phone transmission so I sent in a carelink report.  The nurse practitioner called to tell me "everything looked good, but..." My heart climbed into my throat and all I could think of was, "Oh, no! We just went through surgery last summer and now this.  I don't want to see him miss out on anything or have anything stand in the way of a smooth start to the school year." She said that this time there is some "noise" or impedance on his atrial lead meaning it is damaged in some way.  It could be from an injury such as a fall, rough housing or repetitive movement, but it is more likely that it is just that the insulation surrounding the wire is wearing down and therefore the lead is less effective and starting to fail.  In Connie's case we are lucky because he does have an underlying rhythm of his own and if this were to happen, he shouldn't just collapse.  Theoretically, his pacer should switch modes and go into atrial sensing, ventricle pacing instead of pacing the atrium and both ventricles, which is what he has currently.  We might notice him having a fixed heart rate around 70, causing him to be rather sluggish and tired.  Dr. Bromberg said that even if the lead did completely fail, we might be able to put off replacing it surgically until he is older, as he has quite a bit of scar tissue on his heart and finding a good place on the atrium to attach a new lead would be a tough job. Conversely, placing a lead venously would compromise his vein, which, as the doctor put it, he will need for another 70-80 years. 

So, we will up our vigilance just a bit while trying to carry on as normally as possible.  I asked about sending reports more frequently or checking his heart rate nightly and was told to not go crazy and just keep doing what we've been doing, which is letting him live like a pretty regular kid.  It is a reminder, though, that he'll never be cured and just when we get out of the routine of being overprotective it seems something comes along that thrusts us back into the reality that he has a pretty messed up heart.  If you would pray that this newest discovery maintains its "let's just keep an eye on this" status, or better yet, clears up by the next transmission, we would really be grateful. 

Friday, May 24, 2013

Last day

Today was the last day of school for Conway and Mary Kathleen.
It was a half day. On this day there is a closing ceremony and the children are called by name to receive awards related to their demonstration throughout the year of their understanding of the goals and criteria of a sacred heart education. Connie's award was for consistently demonstrating enthusiasm for learning. We can hardly believe that 10 months ago our boy had just had open heart surgery and we questioned whether or not he was really ready academically, physically and emotionally for the primary (kindergarten)year.
Here he is today 10 pounds heavier, 4 inches taller and READING! He just brought home a reading end of unit test with an 89%. But get this... it was a FIRST grade, unit two test! We are so thankful for the education he is receiving and are so proud of all that he has accomplished. He really is a walking miracle and a testament to the power of prayer and perseverance.

Saturday, April 20, 2013

Mary Kathleen's First Communion

Mookie received her First Holy Communion on April 13th. This was a day she had been looking forward to for years. I remember when she was just a toddler and she'd smell my breath after communion and ask when she was going to be old enough to get it herself. I am confident that she was prepared and fully understood what she was partaking in. Her school does such a wonderful job with sacramental preparation. One thing that made it special was that it was in the Shrine of St. Philippine Duchesne. She also had a special part in the mass. She and some classmates led the congregation in singing the responsorial psalm, "Taste and See", and you could really hear her singing out. The children each processed in with either materials to dress the altar themselves or with wheat, etc. Another really fun thing was that most of the songs chosen for the mass were songs by artists like Chris Tomlin and are played on our local Christian radio station so our family was very familiar with them and MK had a lot of fun singing them. Here are some pics from the special day. Frances' first mass MK with her 2nd class teachers MK with her best friend, Naomi MK with Fr. Sean Martin and Sr. Maureen Glavin (celebrant and Head of School)

Monday, April 15, 2013

Frances Erin Beckemeier is here!

This post is about a week late, but we've had a busy week, as is to be expected when you have a big family! Not only did we have Karsten's birthday, we also had Frances' arrival and then this weekend was Mary Kathleen's first communion. Frances arrived at 5:19 pm on Sunday, April 7th. She weighed 9 lbs 2 oz and was 20.5 inches long. She came out crying and immediately sucking her fingers. She has been a very good baby. I just can't get over how petite and dainty she looks. All the 3-6 mos clothes we bought thinking she'd be almost 11 lbs aren't going to fit her for awhile! We got the call to head into the hospital at about 7am. Labor was started with Cytotec at 9:30 am and contractions began about an hour later. I got to spend some time in the new L & D bathtub and shower. It was amazing how I felt NO contractions while I was in the tub. I got out because I actually thought they had stopped. Then I realized they had not :( Later in the afternoon I was offered an epidural and accepted. However, the epi did nothing other than make my toes a little tingly. I still felt everything. Finally around 4:30 the anesthesia supervisor came in and had to take out the first one and start a second epi. Just about the time it started to kick in, it was time to push. She even made the comment that it wasn't the first epi she'd had to redo that day. The nurse called the doctor and she arrived a short time later. Frances practically slipped out as I was moving down on the bed to get ready to push. On the next contraction she was delivered! One nurse said something about what a good looking boy we had and I got a little freaked out! Then she and the doctor confirmed she was indeed a girl. Phew! Frances was placed on my tummy and had apgar's of 8 and 9. The kids came up for a visit before heading home to get ready for bed. I couldn't get over how excited Conway was to have a new baby sister and to hold her. Grandma and Grandpa George and Grandma Marybelle were the first visitors to see her. The next day she had her hospital photo shoot and her echocardiogram. Conway's cardiologist read her echo and confirmed that her heart is normal. The pediatrician had heard a murmur on the first day of life, but not on the second day, so that was another reassurance for us. Frances wore the same yellow dress home from the hospital that I wore home in 1978. It was a gift from my Grandma O'Leary's friend, Fran Overman. Fran also happened to be a graduate of the school where Connie and Mookie attend and where I work! We've been home six days now and things are going well. She is a very good girl and the noisy house she inhabits doesn't seem to bother her a bit! Thank you for your prayers! I'll post about MK's First Communion soon.

Monday, April 1, 2013

No Joke!

Although today is April Fool's Day, this post is not a joke. It is all true, even though it seems almost unthinkable! Connie had his check up with his cardiologist today. It was a routine visit and six months from the last. He had the works including an echo, pacemaker check and all the regular things they do during an office visit. First bit of news is that Conway is in the 75th percentile for height and weight for his age. Our small fry is growing by leaps and bounds-almost four inches since his surgery last August. Dr. Bromberg was very impressed by his growth (49 lbs and 46.5 inches) and called him a lean, mean machine. He said he looked like a power forward! We then chatted for a moment about Michigan's win yesterday and berth into the Final Four. Go Blue! Connie gave Dr. Bromberg a gift since Saturday was National Doctor's Day. He got a t-shirt that has a heart with a beat in the middle of it and underneath the heart it reads, "Got Rhythm?" (similar to the got milk? ad campaign). He loved it and said he thinks it will be perfect to wear under his scrubs when he does ablations :) Pacemaker checked out fine, showing 3-4 years of battery life left on it and an underlying rhythm in the 30 bpm range. During his echo he requested to watch Calliou on the TV so he did. He is always so cooperative and pleasant while the techs painstakingly search around for requested pictures trying to figure out his complex anatomy. Dr. Bromberg couldn't get the file to transfer from the ultrasound machine to his computer so he came in the room to review it and commented that he'll study it further later when he isn't distracted, but at first glance he looks great. Dr. Bromberg spent some more time with sharing how pleased he was at how everything is going. He mentioned to the echo tech that the mitral valve surgery in 2009 helped him a great deal and that this most recent surgery seems to have gotten him exactly where he needs to be. He is even considering stopping the Enalapril, which would mean that for the first time since Conway was 4 weeks old, he would not have to take a daily heart medication! He also says he can't justify bringing us back in for more testing for a year... A YEAR! The longest Conway has ever gone between cardiology visits is six months (just this past six months, never could make it that long before!). We will still dial in the pacemaker checks every 3 months, but unless we have concerns, there is no need to echo him or listen to him before next spring. I think Connie is a little disappointed, given how close he is to everyone in that office. He's been there so often he actually looks forward to going. He's kind of a little star in their book considering how sick he was and how far he has come. To be honest, I don't mind going frequently as it gives us a great deal of reassurance. However, I realize that a part of healing is moving on from the constant monitoring and living more like a normal kid... one that doesn't have to spend hours and hours in doctors' offices. So, we will try to embrace and enjoy this new path we are on for as long as we are on it. On another positive note, Connie just received his third quarter report card, reflecting a boy that is on target in all areas except PE and handwriting. He just started working with an OT, Mrs. Debbie, who is quite impressed with him already. He lacks some endurance in his upper body and tires when doing small motor tasks so he's been given some chores to do around the house to help him build some muscle. I expect now that the weather is improving he'll be building a lot more strength with all the playing outside. Just the few nice days we've had lately, I have already observed a significant improvement in his stamina and interest in playing outside. He's gaining coordination and balance too, by riding his razor scooter for long periods of time. Who knows? We may even end up attempting to learn to ride a two wheeler by the end of summer! We hope to write another post very soon to announce the birth of Conway's new baby sister. I'm scheduled to be induced on 4/7 if she hasn't come on her own by then.

Sunday, March 3, 2013

Six Years

Can you believe it? Our dear boy has reached yet another milestone! He turned six years old today. I thought it was funny that when I posted about it on facebook, his very first nurse who cared for him in the NICU at Mercy (St. John's at the time) commented on how she couldn't believe it had been six years already. Honestly, most days I feel like it has been at least twenty. No matter how hard I try I can't imagine what life was like before he was in it. Here he was just moments after birth, two days before our world as we knew it came crashing down and we were forced to grown in faith in a way we didn't even know we needed. We spent this birthday weekend doing what he loves... bowling and Angry Birds! Friday night we got a hotel room and invited his cousin Liam to spend the night and swim all evening. The boys had a blast being boys. Then on Saturday, we went bowling with cousins and invited family back to the house for cake and ice cream. Our silly boy didn't even touch his cake. He probably would have rather had fire hot cheetos or something along those lines. Greg made him this awesome Angry Birds Star Wars birthday shirt Playing with his new Angry Bird rocket launcher Playing pin the tail on the Angry Bird He said it was his best birthday ever... I think I believe him! 1 John 5:4 For everyone born of God overcomes the world. This is the victory that has overcome the world, even our faith.