One year ago today... Brandt's 2nd open heart surgery had just been completed. Thankful to a great God for amazing healing!!

15 months!

Heart Cake decorated by brothers

Well all you Brandt fans out there...this will most likely be my last post for a while. I so appreciate how friends and family continue to ask about and pray for this amazing little man. And the really great news is that he continues to thrive! Both his 1-yr pediatric check up and last cardiology visit show continued growth and strong heart function. We'll have another echocardiogram the end of September, but unless anything changes, there are no planned heart surgeries or procedures until he reaches around 33 lbs. Most likely between 2 and 3 years of age.

We PRAISE our great God and plan to just ENJOY every single day--and Brandt sure makes that easy to do. He continues to bring joy to so many people with his smiles and happy waves and faces. We made a quick weekend trip to Myrtle Beach with family, and he loved getting to be outside for bike rides, swimming, and some limited time in the sand. This is such a change considering we have basically kept him in through his first year of life to avoid extreme heat, cold and germs. Dr. Raunikar reassured us that at this point, he can pretty much self-regulate as far as his tolerance to temperature and fatigue. And he definitely lets us know--plays hard and then crashes hard to sleep! He took his first long trip-- to Ohio in July--and while he's still not a fan of long trips or the car seat, we were excited to get to introduce him to friends and family there. Including a close family friend who is very sick with cancer and its extensive treatment. So we were thankful that he did as well as he did for the necessary traveling. He also enjoyed a little day trip to an amusement park and loved his first carousel ride--in fact we decided he would probably jump on some coasters with the older brothers if he could--no fear here!

He LOVES electronics and can unlock pretty much any cell phone he comes in contact with as well as operate remote controls, light switches, and the dish washer... Lights and fans are long-time favorites, and this week, almost exactly a week after his 15 mos birthday he started WALKING. Just took off with over 10 steps. He had been taking some hesitant little steps that were more of a lunge, but he seems to finally have the hang of keeping his balance. We are just blessed beyond words with his continued progress and growth. So enjoy a couple more recent pictures, and know that he's doing well. I will plan to post only for any significant changes at least in the near future, but again cannot express our gratitude for all the ongoing support and prayer for him that has been communicated by so many!

Happy 1st Birthday!!!

So I love these flowers that bloomed this month, because one year ago today these flowers were blooming at home while we sat in the hospital at MUSC waiting, and waiting, and wondering, and waiting with great anticipation for little Brandt's arrival. This year, not only did the flowers bloom early, but we have survived an entire year of the treatment of a severe congenital heart defect and all that involves, as a family. And survived isn't the right word I know...the difficulties of this past year have produced a "blooming" in our hearts--gratitude, appreciation for important things in life, increased confidence in God's character, to name a few. We just started an amazing series at church on the book of James, and the first couple verses discuss viewing difficulties in life as "joy." And that doesn't mean fun...but God does promise that the end results give an endurance we wouldn't otherwise have. And so, our flowers symbolize both the lessons and joy of this difficult year to me.

As does our handsome birthday boy's smile--he is so full of life, and fun, and mischief! May has been a great month for him. He gave us a little scare with the first cold/virus of his life. After getting safely through flu season, he came down with fever, runny nose and nasty sounding cough. But he checked out fine with no secondary infections, and in the meantime has moved from crawling to almost walking with no time wasted! He loves making any kind of mess, and has even started babbling some consonant sounds at us. We were thrilled to see all this progress at once from a developmental standpoint. Everything is "baba" and "dada" right now, and he wants to share these "deep baby thoughts" with anyone and everyone who might be around. Anyone who even walks by when we're out in public is fair game for his piercing stare and the ensuing flirty smile and baby babble. But let me tell you, his brothers are his favorites. Now that he can follow them around the house, he feels they are dutybound to include him in all activities, and wails if they dare to close a door on him to keep him out of trouble! He's a little daredevil with endless energy. Several people have remarked to me that we will really be in for it after his third surgery. Well, bring it on--this kind of mischief we couldn't be happier to see. We also welcome another nephew/cousin to the family this month, Mark Judson Grover, born 5.10.2011, and look forward to the "babies" being able get into mischief together.

So happy happy birthday our sweet heart baby--we treasure every minute!

April 2011 - Matters of Life and Death

Brandt's 11th month has been a full one--in many different ways. I've started several times to post an update, but haven't--also for many different reasons. Let me begin by saying, when I created Brandt's Beacon, I wanted to keep friends and family updated on Brandt's health situation. I wanted to keep some kind of record of his story. And mostly, I wanted that story to offer HOPE. And this mischievous, sweet, loveable boy has, by the grace of God, done just that. He doesn't quit! We thought he'd feel better after his bi-directional Glenn, but he's a WILD man. One week before he turned 11 months on April 25, he got the hang of crawling. It was a hilarious half drag half squiggle at first. He figured out how to stand on his head and do a comical plank--then get stuck in that position. But once he realized he could get his legs to follow, he was GAME ON. The word "no" is now an integral part of his caretakers' vocabulary. Not that he likes to acknowledge the word, but he's learning. As my father-in-law says, "Half a heart, double trouble!" And we love it. I think we'll need body armour after his third surgery--or at least some shots of Red Bull to keep up with him.

So logically, I think, our boy is doing well beyond all imagination, life should be back to normal, right? Wrong. This month has been, I think, the culmination of many swirling emotions. Due to physical challenges for me I am completely dependent on family for Brandt's care...and amazing family it is...we are so blessed!! But I hate being a burden...and wow I sound like a whiner. Putting all this into perspective, and I hesitate to write about it, because there are no words--two of the babies I asked you to pray for unexpectedly passed away this month. Little Patterson and Baby Olivia had both faced massive struggles in their fight for recovery, but we were so thrilled when Patterson got to go home, and Olivia's parents were also anticipating that in the near future. We shared hours together in the PCICU waiting room with these dear families when Brandt was at MUSC in December. They spent MONTHS there, fighting alongside their sweet babies for any news of improvement and recovery. So we were shocked and devastated when I read that their fight was over.

Our boys also lost a schoolmate to cancer this month. I grew up with his parents, and we had spoken with them occasionally as Jona fought his battle over the past couple years. Throughout the ups and downs, he inspired so many with his persistently optimistic outlook. He insisted on being at school as many a 16-yr-old would not want to be even when healthy! He continually expressed his love for God and faith in His Savior's goodness. He was ready to meet His Savior and his family rejoices that he's in Heaven, pain free, as do Patterson and Olivia's parents.

And so, how do you address these events with 10 and 11 yr old boys? They see the grief that comes from aching for these families' losses. We talked about Jona's praise and thankfulness, even as he was dying. We talked about how as Patterson's mom mentioned, he and Olivia can be playmates in Heaven. That we don't know everything about Heaven but that we know it's more wonderful than we can ever imagine. And these families have all focused on that, and continuing to offer hope to others going through the same battles. I think it finally hit me, through the recent Easter season, that "because HE lives, we can face tomorrow." Because Christ defeated sin and death, and lives, is the only reason we don't have to live in the fear and power of death. Grief is a part of life, but true hope comes from the power of Christ, Victor over death. And we pray for His grace and peace for each of these families, and ask you to as well, because we CAN'T offer hope and comfort through human perspective. I can't tell my boys--or myself--that Brandt will make it through his next surgery, or today, or tomorrow for that matter. Or that any of us will. But I can offer the confidence that "NOTHING can separate us from the love of God, not death, or life...not things today or things tomorrow...NOTHING." And that's a beacon of hope.

Spring Break--Brandt's first "day trip"

Love my brothers!

Playing with cousin Cali

Reading with big brother Seth

Yesterday was Brandt's 10-mos birthday, and we celebrated with a trip to the zoo with the whole fam! With the older boys on spring break, we were incredibly excited to take our first "fun trip" with Brandt able to enjoy being out and about. Glenn and I both had the day off--my first since going back to work that was not connected with a dr visit! Brandt got his last RSV shot this week, and being past the official flu season and so many germs, we feel able to relax about having him around crowds. Plus the weather was gorgeous, and Glenn's parents were able to join us for a great day.

We were thrilled to learn that Brandt has surpassed the 20th % in weight...that's a lot of growin' for a tiny little fellow below the 1st % when we came back from Charleston right before the New Year. What a huge joy he is to us every single day...just loving life, loving his brothers, and reminding us how God answers prayer. He also had a follow-up cardiology visit, and his heart function continues strong as far as no additional leakage or narrowings. Next visit will be 3 months out...we will hardly know what to do with ourselves!

9 months!

Sittin up all by myself!
Sheba tolerates me, and I LOVE to pull her ears or tail.

Playtime in my saucer...happy as can be!

I started to write this update a month ago...and here I am still trying to load 9 mos pictures and we're up to 10 mos already. But for all you Brandt fans...here's a couple months worth of reasons to celebrate! He continues to thrive--he's added a full range of foods to his diet and twirls his hands to ask for more with huge "mmmmms" for his favorites. Between 8 and 9 months, he went back to sleeping through the night on a regular basis-yay me-and still shows amazing energy during the day. We knew he was supposed to have a higher energy level after the Glenn surgery, and that has certainly proven to be the case.

He also started sitting up all by himself at about 8 and 1/2 months...still not really trying to crawl yet, but every time I start to get concerned about his progress, I think how mind-boggling it is that his little chest has been completely opened 3 times and he still has come this far.

I would like to ask you to remember a couple of Brandt's heart friends in prayer, as you continue to pray for him and his healing. First baby Mason had his bi-directional Glenn in February, and is working hard to try to come home from MUSC. After some infection complications and a surgery for a trach, he's finally feeling better, but I know his family is ready to come home. We also received word that baby Xavier, who was born while Brandt was at MUSC in December, had passed away Feb 25. He fought long and hard in his battle with HLHS, and I know his mama Ashley would appreciate your thoughts and prayers through her grief. Baby Patterson is home, but still needing around the clock care with the huge amount of equipment helping him fight his fight. And baby Olivia is slowly improving from a very difficult round of lung disease, still in intensive care at MUSC...since before we first went in December for Brandt's second surgery. My heart is full of care and concern for these amazing families...they have all been a blessing in different ways, with different battles. Certainly the list goes on, but these needs come to mind, and thank you, as you can, for thinking of these little ones who have been touched by heart disease and all it entails.

8 months old today!

Well of course I have to wish our big man a happy 8-mos birthday! Hard to believe, but I just stand in awe today of how great our God is, and what amazing things He has done for Brandt to be where he is...I am happy to report that all the bloodwork came back within completely normal limits, and the infection is just a bad memory!

He also had a good pediatrician appt (despite 4 shots) and is back to his 5th percentile for weight--yippee. We are able to start weaning him off the reflux meds, and Dr. Stoeber also gave me some help to continue supplementing his calories. He has really taken off with his solid foods--doesn't care for just the cereal but gobbles it down when mixed with a little bit of fruit or sweet potatoes.

And--we all survived my return to work last week. I miss him terribly but he's doing really well with Glenn's parents and sister all doting on him and eating up his back-to-normal bubbly ways. He continues to wake up at least once through the night, so the schedule has been pretty rough to date. I'm hopeful as he continues to heal completely he can return to stomach sleeping and at least be able to get through seven to eight hours...although after everything he's been through I have no complaints about an extra feeding through the night. Just much thankfulness for the continuing miracle of his life...

One year ago today...

...we found out the sweet little baby we were expecting had a serious congenital heart defect. One year ago today began a roller-coaster of a year filled with so many emotions I can't even begin to describe. In some ways, this year has been one of the longest in my life, and in some ways, it's a complete blur. We welcomed our third little boy into this world to watch him go through one medical procedure after another...and bounce back smiling. I could not have imagined the challenges...or the blessings. God has proved Himself faithful time after time, and we trust in that continuing faithfulness in a future of continuing uncertainties.

AND, the latest of the good news...Brandt got a great report from his cardiologist, Dr. Raunikar, at his appointment yesterday! His echocardiogram looked wonderful, and we're able to stop his lasix medication. I'm really excited about that, because it means the fluid around his heart is in good shape. Not to mention that I've been able to stop double-diapering since his fluid output is greatly reduced:-). His weight is back over 15lbs, so he made it back over the 1st percentile as far as weight gain. He's also been eating better, so we were hopeful of this increase, and expect it to improve even more as I'm able to get him started on some solid foods. We should get the blood test results back this weekend or early next week. Barring anything unexpected from those results--no more cardiology appointments for 2 months!!!!

I joked with Dr. Raunikar that we were going to go into doctor withdrawal mode...not really, as it's a huge relief to be able to scale back these visits. But we truly have made friends with this wonderful medical team. From the time Brandt's condition was diagnosed and I started seeing Dr. Greig and Dr. Raunikar on a regular basis, through the communication to the cardiac team in Charleston, we have felt completely supported and cared for on so many different levels. Dr. Raunikar and one of his nurses, Cammy, even called and kept in touch through our emergency visit to Charleston. Diane is a receptionist there at Greenville Hospital System and has checked us in for visit after visit, and when I came out in tears after confirmation that Brandt had an infection and we had to head back to MUSC, she stopped right there and prayed with us...just a few examples of a team going beyond caring for this little baby's physical needs!!

Brandt sees Dr. Stoeber for his six-month pediatric visit on Wednesday of this week. We hope to get his immunizations caught up and discuss reducing reflux meds and a plan to beef up the calories in his diet. Then Thursday I am scheduled to return to work. After such intense time with this little miracle, I am sure I'll have a lot of adjustments to make in the coming weeks. But we praise God for his provision to this point, and look forward to "catching up" in many different areas that have had to be put on hold out of necessity. Brandt will have good bonding time with Glenn's parents and sister, and we thank his Mom for being willing to watch our precious gift. The boys were scheduled to return to school Friday after a LONG Christmas break due to several snow days, but Seth came down with a fever close to 103, so we hope to have them settled back into a routine as well next week. We also continue to keep Brandt in as much as possible throughout the flu season. Lots of changes, once again, and I face them with hope--that is to say--a confidence that God will continue to lead and provide.

I will try to post occasional updates and pictures here, but plan not to have much breaking news or huge developments in the near future. We again sincerely thank all of you for your messages of prayer and encouragement, and ask you to continue to pray that Brandt will remain stable and growing, and that we'll have wisdom for all upcoming decisions.

Sleep sweet Sleep

Well I am going to blog more often about the fact that Brandt isn't sleeping well...perhaps some of you thought specifically to pray about that--for him and for me. But 3 of the last four nights he has slept at least six hours, and up to eight hours one night. He also seems to be in less pain and hasn't required pain medicine for the first time since we've been home.

We were supposed to have an echo and get his blood levels checked again today, but we have SNOW here and almost everything is cancelled. This appt is rescheduled for Friday, so I continue to reserve judgment on his status until then, but we are REALLY encouraged.

Also here is an encouraging story about the oldest survivor of HLHS...I've mentioned before that we're so thankful for all the advances in treating this condition, and at the time she had her surgery, only one in 10 babies lived!

http://www.npr.org/2010/12/13/131910144/as-newborn-heart-surgery-improves-survivors-thrive

Progress?

We're trying to get settled back in at home and to some kind of routine, but Brandt is struggling all over again with both eating and sleeping. The first couple days back I thought he was going to gradually INCREASE his sleeping time at night, but instead he's gone backwards. He's still basically happy, like he's feeling better, but at times just acts really uncomfortable. He won't sleep for more than 3 to 4 hours at a time, and only 45 mins to an hour average during the day. We continue to pray this is all part of the healing process...the doctors remind me he's been through an awful lot in the past month. After all, he had a heart cath, and two major open heart surgeries all within 3 to 4 weeks.

Monday he had a follow-up cardiologist appt, and that did put my mind at ease as everything looks good with his incision. He'll finish his antibiotic course tomorrow, and we'll have another check next Monday. The doctor ordered a blood draw to check for inflammation and white blood count for infection, and everything came back normal! What a relief...and I'll feel even better if his white count stays low after he gets done with the antibiotics. His weight has taken another dip, which is probably to be expected after all the procedures and sedations, but I still hate hearing that he's now below the 1% in weight...we're trying to get all the food possible into him. Another plus is that the reflux seems to be almost completely gone--one less challenge, even though his lack of appetite is unusual for him.

Glenn and I also celebrated our 13th anniversary this week...I am so thankful for all his love and support through this journey...God has been gracious to grant us a wonderful friendship and growing love even while life presents challenges we never imagined or prepared for!

Happy New Year!

Well here's to a brand New Year--hopefully one with no surgeries or emergency trips to Charleston! Brandt is doing GREAT so far at home. He wants to thank all of you who have prayed for, and loved, and supported him in so many ways in his first eventful year!