Days 1 and 2 Post Norwood Surgery

So we left MUSC that night elated with how well Brandt had come through the surgery but still very concerned about the critical first 24 hours and I pretty much crashed. We didn't sleep much the night before surgery, in fact I hadn't slept much the entire week since he arrived, adrenalin I think, mostly, and getting through that long long day felt like an accomplishment. But I was still awake in the middle of the night trying to get on some semblance of schedule that could resemble Brandt's whenever he was ready to nurse, so I called PCICU around 2am to get all the good news that he had NOT had a 12-hr slump etc. I mean, I had tried to absorb all the different medications and tubes he was on . . . to name a few (with high risk for misspellings here go easy on me please):

Fentanyl, Oxycodone, Morphine-- for pain

Dopamine, Milrinone and Nitric Acid-- for regulation of blood pressure

Lasix-- for fluid reduction (especially around heart)

Vecuronium--for paralysis

Heparin--blood thinner

Cerebral oximeter--(ugly bandaid looking thing on his forehead) to monitor brain capillary o2 sats

NG tube--for meds and feeds through nose

Oxygen cannulas--oxygen and air flow support

UAC and UAV catheters--for blood draws and meds

Mediastinal Chest Tube--for chest cavity drainage

Ventilator--for breathing through mouth particularly during paralysis

Folley Catheter--for urine output and measurement

That gives you an idea of SOME of the "stuff" invading this tiny, less than 7-lb body . . . but even as I read through my notes from these days, it's still incomprehensible to me. Thankfully, the cardiac team constantly evaluated and "pulled" or reduced equipment and meds alike as soon as possible. The nurse (Jackie)who took care of Brandt the day of surgery and several days after carefully monitored his pain levels and patiently explained and reexplained what everything was for and why it could or couldn't be removed as he progressed.

Tamara and Adrienne were another couple nurses who had Brandt for the first few critical night shifts, and Tamara had a way of setting goals for what they would "wean" him off of. This first night when all the meds were supposed to be increase she gleefully informed me that his nitric acid, oxygen and BP meds had all been reduced, in addition to the great news the next morning that Dr. Bradley was considering closing his chest the first day after surgery if all his swelling and drainage continued at such good progress.

They did continue through the morning, and all the paralytic meds had been reduced, so our little guy was awake finally. Another good sign...he was breathing OVER the vent and sucking his pacifier! Around 2pm they started another round of the paralyzing drugs to prep him for his chest close, which went very smoothly as well. This relieved our minds knowing Dr. Bradley felt the critical first hours of swelling and possible infection were past. When we walked into ICU to see him, he was already responding to our voices by blinking his eyes. I think this is the first sense humanly speaking I had that he was going to be OK. Nurse Jackie said he was just too nosy to let paralytic drugs keep him asleep! The doctors declared at this point he was "far beyond standard" in his recovery process.

That night we went to a support group dinner sponsored by Cross Bridge Ministries. My heart was so full of gratitude for everything God had done in little Brandt's body, and yet my emotions constantly threatened to overflow just from all the ups and downs of watching a newborn infant go through these extreme procedures. We met several more dear families at this support dinner who have been through the ringer so to speak. One of these sweet mothers opened up and shared the story of her 5-yr-old son functioning without either kidney, undergoing dialysis and waiting to be activated on a transplant list. As I struggled to find the emotions and/or words to offer comfort, I was thrilled to hear Glenn and Melissa (Cross Bridge founder) sharing the hope of God's love and Christ's sacrifice with her . . . ultimately there is no comfort apart from this. She had never heard the Gospel of salvation and gladly accepted Christ as her Savior. We were ecstatic, and God once again spoke quietly to my heart about trusting His plan for our good and His glory. If even one soul came to know God partially because of what Brandt has been through already, what an honor and a privilege He has given us! Not to mention the beautiful gift of Brandt himself, this little heart and soul that we pray God will continue to use . . .

Brandt continued strong through the night, and Nurse Tamara reported his reduced vent and oxygen settings were low enough to start CPAP trials on Thursday morning. This test measured his ability to breathe without the support of the vent, but while leaving the machine in place until he could last 30 mins without dropping saturations or blood pressure fluctuations. The first time they tried, he lasted only one minute. But he was still coming off pain meds which also made him very drowsy, so once he was off the strong pain meds, they tried again and he passed easily. They continued the tests through the afternoon and evening, saying that if he continued to do well, they might be able to extubate him soon. He had a rough test in early evening, but passed the 2am test easily. We began to see a pattern that when he had higher doses of pain meds he got groggy and didn't do well breathing on his own, but did not want to rush things. At the same time, I knew Glenn was leaving in 3 days, and we both REALLY wanted him to see Brandt off the ventilator before he left. Also by late afternoon on Thursday, Brandt was CHEWING on the thing like it was something to eat. They restarted a 3cc feeding drip through his NG tube to see if his digestive system could handle the breastmilk. When I called the next morning . . .