Cardiology/High Risk Clinic Appts

Well the last couple weeks with Brandt have been very challenging as he's struggled with head congestion and had more than normal reflux episodes. Plus he seemed sleepier than normal and lack his normal good appetite, so I was really glad we had a scheduled cardiologist appt and echocardiogram on the 9th. He hadn't gained much weight--10lb 14oz-- but everything continues stable...no additional valve leakage, no narrowing of his aortic arch, strong function for the shunt and right side of his heart. Glenn and I both will meet with Dr. Raunikar the beginning of October for an overview of the heart catheterization and second surgery, the Glenn procedure.

We also went back to Charleston on Tuesday Sept 14 for Brandt's first high risk follow-up clinic. Basically a doctor examined him to determine if the open heart surgery and recovery have caused developmental delays. From here on we will attend these clinics locally, but they recommended this first one be done at MUSC where they have been following him and monitoring his condition so closely until the second surgery. The doctor's main concern is possible lack of muscle tone...they have recommended a second analysis by a physical therapist. She felt his torso muscles were weak and his fists too tightly clenched as when babies are first born. But Glenn and I both felt that a 10-minute exam after a four hour car trip isn't really an accurate reflection of his true "muscle tone" and aren't concerned. Of course they also want him to gain more weight. Even though he weighed in at 11lbs 1oz for the first time, he is hovering barely at the 5th%. The doctor also mentioned seeing a nutritionist, which is something to consider.

While I'm sure physical therapy can't hurt, neither the cardiologist here nor the pediatrician have noticed significant delays, and they see him much more often. So a lot of driving, but we are thankful they want to see him grow and develop as strong as possible...and we got to see some of our friends on 7C, meet another heart mom I had e-mailed but not met in person previously, and catch up with Melissa our dear friend with Cross Bridge Ministries. Her little guy Mason just got to move to 7C! The surgeon's assistants were also available and it was great to visit with them and show off our sweet Brandt. Time well-spent!

3 months/Cardiology Appt

3 months old!

Yay for Brandt -- what a big week he had! He turned 3 months old on Wednesday, hard to believe. Plus passed a hearing check with no problems, and had a good progress report from the cardiologist on Friday. And today--he rolled over on his own! He just babbles happily at us all day, puts up with all sorts of poking and prodding from the doctors with hardly any complaints, and is the most amazing, pleasant baby. What a love, a blessing we could never have imagined.

He did register a protest about his chest xray on Friday--at first he was just studying all the equipment with great interest, but when he realized I meant to leave him lying on that hard board in the freezing cold room, he let loose with one of his famously loud howls. But the doctor reports that everything looks just as good as it possibly could as far as size and development of his heart and lungs, considering his condition. His oxygen sats continue strong between 85 and 90. Dr. doesn't want them going much higher than that, as in a huge jump, but at this point, his stability is another answer to prayer.

Cardiologist Appointment

Brandt LOVES to talk to Joel!

...and smile @ Joel


Brandt had another echocardiogram at his cardiologist appointment this week, and everything continues stable as far as his Norwood recovery goes. Dr. Raunikar went through a very fast description/explanation of the 2nd surgery, but my mind refuses to process all that yet...we are just REALLY enjoying Brandt's happy babbling on a daily basis and thrilled for his progress...weighing in at 9lb 14 oz now :-) He's such a content baby and has worked up to 6 to 8 hrs of sleep at night this week as well--yay for me! The only time he complains is when he's hungry, which is still quite frequently throughout the day, but the extra sleep and many feedings throughout the day are obviously paying off. The pediatrician's goal for his weight gain is a half ouce per day, but this week he gained more than a full ounce a day. That's what we like to see!!!

Happy Times/Ped Appt/Cyndi

So this week...just full of blessings! Brandt had his 2-mos pediatrician appt complete with immunizations--never fun, right? But he was a little trooper as always, hardly cried through the needles and didn't even spike a fever or anything. He's had quite a few reflux episodes again--I've about given up even trying to figure out why they do or don't happen and just be glad when they don't--so I wasn't surprised he'd only gained one ounce since last week's cardiology appt, bringing him to 9lb 2 oz. But, his doctor told me he has amazing strength and muscle tone, better than most HEALTHY two mos olds. He's ahead of the game developmentally as far as "talking" and smiling go as well. Goes along with what his cardiologist calls his "sassy" attitude. Just as the pediatrician finished examining him and started to tell me he would begin to smile and coo more, Brandt began one of his extended "jabbering" sessions complete with huge smiles, and the doctor said never mind, he's obviously already interacting well in advance of normal parameters as well.

As far as growth curve goes, despite the fact he's in the 5th % for weight, he's already at the 50th % for length, and his pediatrician said that really, considering everything he's up against, this is GREAT progress to gain weight at all. 1. His heart having to work so hard uses extra calories. 2. He's on several medications that can affect weight gain. 3. He has reflux. Sooo I found this appointment extremely encouraging as an overview of his progress! All of these heart babies are considered high risk for other developmental issues, just for the fact they've already been on heart and lung bypass machines if for nothing else, so we are thankful for this great news. He's scheduled for additional hearing tests and high risk clinics in August and September.

This week was also my birthday, and it pretty much snuck up on me--with everything for Brandt, and my sister's preparations to go to Africa as a missionary, I just really didn't feel the need to celebrate. Brandt and his smooth recovery and all of us being together are like the best gift ever. But my wonderful husband brainstormed a DVD made with pictures, video clips, and some of our favorite music and Scripture intertwined, to remember all of Brandt's progress. A kind friend put it together for him, and what a tear-jerker! Plus--1. my brother and his family, my sister and our family were all able to get together earlier in the week for my mom's birthday. 2. Glenn's coworkers and my aunt and uncle had a joint celebration at their office for my mom's and my birthday combined. The cake said "happy 96th" :-) Brandt got to meet some more of the many friends who have prayed for him. 3. I had a coupon to a Thai restaurant I had really been wanting to use. Now my sister and I were the only ones who were actually excited about this idea, but Glenn and my mom agreed to go because they love us and it was my birthday--ha! Glenn kept us amused as usual with his rendition of the unpronounceable Thai dish names. 4. We ended the day with an ice cream cake celebration at Glenn's family's house. As a result--I had a day FULL of celebration and just really dear time with family all week.

I mentioned my sister leaving for Africa. She has raised all of her support and her departure date on the 9th has arrived far too soon for us...we will miss her, and sending her off will be bittersweet. She saw a two-year-old little boy the other day and remarked on the fact Brandt will probably be about that age by the time she sees him again. In fact all of her nephews will be much bigger than she remembers them now. But she's excited to do God's work with medical missions in Cameroon, where she is headed, and so we rejoice with her, even though we will miss her so very much--her pending departure makes me treasure this family time together even more, knowing it will be a while before we're all back together again. Our prayer and support go with her--and wow are we glad for the internet and skype!!

Cardiologist Visit/Joel and Seth Summer Fun

Well, this week has just been exhausting, but nothing really new. Brandt and I saw the cardiologist yesterday-he's reached the 9-lb mark. 9lb 1 oz to be exact. So he's still at the very bottom of the weight charts, but at least his gain is consistent. His 02 sats remain mid 80s and good BP readings. All of this indicates we are on track with good progress toward his second surgery...I guess I was hopeful that at some point (in the near future) some of the 8 meds/supplements he's on wouldn't be needed, and the constant attention to his weight gain would relax. At this point it's all still necessary. He's had another rough week with spitting up--and his doctor wants his calorie intake increased if possible. So maybe after surgery #2 mom will get more rest?! Oh, and several of you have asked--I will not be having surgery for right now. My doctor wants to treat everything with medicine right now until after his second surgery as well, due to just everything going on now and the extreme fatigue from more surgery for me right now...probably good advice and I'm hopeful the new medicine will help.

Another good note, I am grateful for family who have helped give Joel and Seth some extra activities during the week. My aunt takes them swimming and other fun outings a couple times a week, and they also get to the library, park, etc with Glenn's family. Glenn's dad has been taking them fishing, and Joel especially has been very diligent in pursuit of a large bass. (Seth gets antsy sitting around waiting for a fish to bite--as do I, incidentally--but has shown a huge aptitude for reading instead.) While Joel still hasn't caught the 5 to 7-lber he's after, he was thrilled to catch this 2 to 3lb large-mouth bass yesterday:-) And Seth LOVED the firetruck and peppered fire personnel with questions at a church activity they attended with my aunt. Lots of happy memories, thanks to such great support, despite the fact it's been difficult to impossible for me to get out with Brandt in the heat.

Shower Pics

Happy Two Month Birthday

Can't believe my sweet boy is two months old today!! He had a great week and has finally started eating like crazy. With a combination of nursing and bottle feeds the spit up issues seem a little better as well. Only down side a lack of sleep since he also has spent several nights eating every two to three hours...but I will happily take this growth spurt any day.

Yesterday was also a really sweet time with dear family and friends who planned a shower for me! They did a great job with decorations to match his room puppy theme, delicious food, and fun fellowship. Brandt did not attend:-)but they had a great display of pictures in his honor, and it was just another reminder of how far he's come so fast-thank you all for a wonderful time.