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!