Happy 2nd Birthday Baby Brandt!

Happy 2nd Birthday Baby Brandt!
Busy as can Be--2 Years Old!

Monday, June 7, 2010

Day 6 Post Surgery

With Joel off to church camp this week and Seth spending time with Glenn's parents and my aunt, I felt like I was set to concentrate on Brandt even though I missed us all being together. So upon Monday morning conversation with Sunday's night nurse who shall remain nameless, and my arrival at PCICU Monday morning, several frustrating events were taking place. We for the most part LOVED our nurses in ICU, felt very confident in their care, and learned tons from them. However when I called to check Brandt's status this nurse blithely informed me that she felt he had been "fussy" during the night and so she gave him oxycodone to settle him down, and when he spit that up, she followed it with a dose of morpheine . . . ay yay yay . . . he had been off pain meds for a couple days now, unless they were doing a procedure and there was a genuine NEED for the meds, in which case of COURSE we wanted him to be comfortable.

Now, this same nurse had informed me the night before when I went back to PCICU to see Brandt that he is "tongue-tied." I had not heard this term before and it upset me a little. I was like "What do you mean, my baby isn't going to be able to talk?!?" She said no, that it meant the tip of his tongue is attached too closely to the lips by the flap of skin directly under the tongue, and that it can cause eating problems or down the road speech problems. Perhaps under normal circumstances this would not have been a big deal, but after just going through an open heart surgery, and never having heard mention of this condition from a doctor or the occupational therapists who had been working with me to exercise Brandt's tongue, cheek and mouth muscles to prepare him for oral feedings--I was upset. The nurse proceeded to say it wasn't a big deal and they would probably "clip" the flap of skin when they did his circumcision. All this gave me the distinct impression she didn't know what she was talking about, because we had been told under no circumstances short of emergency would Brandt be able to have any other medical procedures including circumcision until well after his second heart surgery . . . logical given the fact Dr. Bradley does not want extra trauma to the body, especially trauma requiring anasthesia to cause additional stress. So now I'm envisioning his not being able to eat due to this "tongue" condition, and requested immediately to page the OT so I could find out if Brandt even really had this diagnosis and if SHE felt it was going to cause problems.

I talked to Glenn in the meantime, and he agreed Brandt shouldn't be dosed up with the meds--that maybe she had gotten a little over sensitive about normal "baby crying"--we'd spent enough time with him to know sometimes he just wanted to be changed, or turned--and duh, I spit up strong pain meds, too! He told me to calm down and talk to the OT and the charge nurse. Oops, our nurse that night WAS the charge nurse. By this time I was just plain aggravated because I felt no one was paying any attention to Brandt since he was doing so well.

As usual, Glenn was right . . . and the OT was in full agreement when I got to talk to her later in the day. She was not pleased the night nurse mentioned his condition, because she had not addressed the "short frenulum"--her preferred term for the condition -- with us for several reasons. She had noticed that it was too short for Brandt to stick his tongue out of his mouth, but until we even TRIED to feed him orally, there was no way to find out if it was going to cause a problem. She said it was like putting the cart before the horse to discuss treatment before we even attempted oral feeds. Secondly, I was correct in thinking that Dr. Bradley would not want it treated unless absolutely necessary. Thirdly, this small problem certainly did not call for attention in light of all the other medical procedures we were currently facing. She assured me that if and when it caused a problem, we would work through it.

I also was not able to get hold of a lactation consultant that morning to address some issues I was having with pumping . . . I was by myself in PCICU, even though I thought I was prepared for dealing with the waiting room, it made a huge different having to get myself and my stuff back and forth to the apartment, parking garage, and up to 4th floor . . . the PCICU was frantically busy, and since Brandt was extremely stable, his nurse was not even around most of the time. All these factors were quite frustrating, even though I knew we were just waiting on Dr. Bradley to be available to take the RA lines out. Because it was such a busy day surgery wise, all the visitors ended up spending most of the day in the waiting room while the newer surgery patients were taken care of, admitted, and even treated. I worried Brandt was not going to even get the RAs removed. But, finally late afternoon, the social worker came in from her rounds and was able to at least tell me that the lines had indeed been taken out, though we weren't able to get back into the ICU yet.

Other families waiting for word on surgeries/procedures had gotten really serious news about their little ones with brain damage from lack of oxygen, strokes, etc. I was struck by my pettiness in not wanting to wait for answers to relatively minor concerns, and hope I have grown in my empathy and endurance for both our own and others' medical burdens. Frustration and impatience certainly never help anything...

And, because he was RA line free, once I got to go back in with him, I was able to hold him again . . . JOY!! I had started helping with his care as I could and when his nurse was needed to care for more critical babies -- never thought I'd enjoy diaper changes and mundane tasks with such enthusiasm. The nurse said we'd be able to go to 7C the next day as long as there was a bed available, and Dr. Bradley even came by to say he was "doing very well" again. I pointed out it had only been 2 weeks since birth for him to be going to 7C already, and Dr. Bradley corrected me to specify it had been only ONE week since surgery. Thus the day ended much more happily than it started! Another wonderful event - Baby Evie, a newborn with HLHS from our home town, arrived safely to join Brandt in PCICU. I was thrilled about her safe delivery and praying for courage for her parents, knowing God could provide grace each day for their family as He had so far for ours.

Sunday, June 6, 2010

Days 3- 5 Post Surgery

...so when I called early the morning of Day 3, the nurse happily reported he had PASSED his midnight and 6am CPAPs, and that if he passed the next one, they could EXTUBATE him. This was a huge step because it meant he was ready to breathe on his own. We got kind of a slow start getting to the hospital from the apartment that morning. I'd been kind of down just feeling like he was so uncomfortable and there was nothing we could do, and knowing Glenn had to leave that weekend. So we walked into the ICU and glanced over at his bed--at the time his "nest" was very close to the entrance where we had to "scrub up" and I saw the respiratory therapist hovering over his bed. I got excited thinking they were starting up his last CPAP test and walked over to ask how it was going, and saw -- NO VENT tube in his mouth! I started gesturing a little loudly (in a very quiet ICU) for Glenn to come see, because the respiratory therapist was grinning from ear to ear and said they'd done the test early, Brandt had done great and they'd already removed the vent completely. Then his nurse added -- oh and we pulled the chest tube also! Our little man was on his way back. We were beside ourselves.

Glenn started telling all the hospital staff that he was praying for Brandt to come home by the following weekend (this was Friday mind you). When they informed him that would be a big step, he said, "that's ok, we serve a BIG God!" The rest of that day they reduced and eliminated several more meds, switched from heparin to baby aspirin for blood thinner, and started the nose feeds to reactivate his digestive system, albeit very slowly. For the evening rounds, a Chief Attending Physician over all the Pediatric ICUs came through with the other doctors currently on call. I heard Dr. Forbes the attending doctor give report of Brandt's progress from birth through Day 3 post surgery, and he was trying to explain why Brandt was doing so well. There really was no explanation. The Chief Physician asked if this baby REALLY had hypoplastic left heart, and had he REALLY just had a Norwood Procedure -- were they sure he hadn't just had a more minor, less complex surgery?? I just couldn't keep from grinning . . . we knew beyond a shadow of a doubt he was doing so well due to our Great Physician and the amazing outpouring of prayer going on for a baby precious in the sight of his Creator. Glenn kept quoting to me the story of Blind Bartimaeus in the Bible -- the people who knew him could not believe he was healed, and asked, "Is this Blind Bartimaeus?" They were so incredulous, and we stood in similar awe and gratitude with his remarkable, miraculous rate of recovery.

Even Dr. Bradley mentioned to Glenn that Brandt was "ahead of schedule and doing very well." For a man of few words anyway, cautious optimism definitely describes our interactions with him. We are so thankful for his thorough nature as well -- it really gives great confidence to know how detailed and involved Brandt's follow-up care has been from Day 1, from the operating surgeon's oversite down to each different department's coordination of "the next step." We were told that he does not just turn over care of his patients to the attending physicians, but stays involved in decisions regarding "his" babies' treatments, and came to find out how true that is a little down the road.

That Friday evening several friends and family arrived to visit and were able to see Brandt very briefly. Travis and Joie interrupted their family vacation to bring the boys and bikes back from Myrtle Beach, and the boys also came in VERY briefly to see Brandt since many of his "scary" looking supports had been removed. Seth matter of factly reported to the other kids that he had seen Brandt and "his heart wasn't working." He was inordinately impressed with the monitors and had quizzed the nurse previously about what each line meant. The red heartbeat line that was present before surgery was not reflected on the post-surgery monitor, so to him that menat Brandt's heart just wasn't beating. We rapidly corrected that impression, even though it was a completely logical assumption!

It was so good to see everyone although the intensive schedule did not permit extended visits like we had envisioned working out...with the ICU schedule, we stayed pretty close to the hospital other than sleeping. On Saturday (Day 4 post surgery) Brandt was completely off the oxygen, and it was wonderful to see those cannules come out of his nose. Dr. Bradley did decide to leave the RA lines in another day. That discouraged our hopes of 7C (stepdown recovery unit) before Glenn left, although I found it pretty remarkable that they had even mentioned 7C four days after a Norwood surgery!!

By Saturday night they increased Brandt's feeding amounts to the full 65ccs they wanted him to get into his stomach. But at this point the breastmilk (that I had been pumping over the past two weeks!) was being fed through his ng nose tube over a period of 3 hours, then they would continuously start the process all over again. The goal was to gradually compress the feedings as his stomach could handle it. Sunday he was handling the full amount ok, with lots of pooping and peeing the night nurse reported to her chagrin as she'd had to change all his bedding several times! Ann, the Saturday nurse, was very kind to give us a tour of the 7C floor so Glenn could see where Brandt and I would be once we moved there.

Saturday night posed sleep challenges at the apartment as well. Joel came down with some sort of nasty bug and threw up repeatedly. Glenn was scheduled to leave that Sunday afternoon with the boys and my Mom, and I was pretty teary about their going. But having hope to move to 7C was huge, and we were counting our blessings to have come this far. Glenn made it to church and got to see several of our new friends through Cross Bridge, then we visited Brandt one last time together...I knew it was just as hard for Glenn to drive away, if not harder, than for me to stay, but was just so thankful for his loving care of me and Brandt, and his being with Joel and Seth at home, and taking care of job responsibilities, and numerous other worries that he's helped me through. I drove us back to the apartment -- he approved my driving and navigating skills for getting myself back and forth to the hospital :-)--then they loaded up and headed home.

Dr.Bradley decided to take the RA lines out on Monday, so I knew they wouldn't be taking them out Sunday afternoon, but I still wanted as much time as possible with Brandt both Sunday evening and Monday morning. We had learned from our nurse Jackie that Brandt's recovery was the smoothest she had EVER seen for a Norwood surgery. She did explain that Dr. Bradley had to take the RA lines out, (one of the nurses had been able to remove the umbilical cord catheters) because since they were attached directly to the heart and could provide an external pacemaker in case of emergency, there was risk of bleeding with their removal. Other than that we had a clear path to discharge from the PCICU, as Brandt was handling even increased calorie feedings well. So I prepared for extra good bonding time with him with the rest of the fam gone for the week.

Thursday, June 3, 2010

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 . . .

Wednesday, June 2, 2010

Before/After Norwood Procedure

So it's hard to go from this...(pre-surgery)

...to our sweet boy paralyzed and hooked up to all manner of wires and tubes.

BUT... from the point that they paged us to let us know that Brandt was off the heart and lung machine, we have not been able to even keep up with his tremendous progress. The surgery itself went smoothly. Dr. Bradley said they had to take the aorta repair very slowly, but he was pleased with the outcome. Brandt's only complication had been a drop in O2 sats on the way back to PCICU. They were checking to make sure no stenosis of the new shunt was taking place . . . this is a high risk anytime from the first surgery, really until after the second surgery. Stenosis is a narrowing of the shunt, and can block the body's only flow of oxygen to the lungs. But his echocardiogram showed good flow and no stenosis, so they felt the 02 drops were due to his body's adjustment to the restricted flow of oxygen, an expected result of the surgery. Before surgery nothing prevented the mix of blood with his ductus arteriosus open, so his 02 saturation levels were running high, between 90 to 100. Afterwards, the flow is directed with just the one shunt, and normal saturations until the second surgery (called the Glenn procedure) are expected to be between 75 to 85, sufficient for a baby's survival and growth.

Glenn prayed with the surgeon and his team to thank God for the results before we got to see Brandt again--we were both so excited to know he had come through safely. Glenn practically danced a victory jig, and had to be restrained from bear hugging everyone in the ICU as we came in to see our little Super B.

I had read about and seen pictures of all the vents, tubes, pumps, swelling and sundry medication pumps to expect, but the hardest thing for me was actually the fact that he was so very still. His swelling was much better than expected, but the paralyzing drugs were still in effect, his only movement a slight rise and fall of his chest. From this point forward though, Brandt started to defy everything the doctors told us to expect, in such a way we could only attribute it to God's miraculous work in his body through modern medical technology. We have been completely impressed with the cardiac team here. Drs and nurses work together very well, with Dr. Bradley having final say in pretty much everything having to do with "his" heart babies, but in predicting what we should expect, they have been "off" in a good way:-) For example, they told us:

  • "His blood pressure meds are unusually low, we will almost certainly have to increase them during the night" -- they actually DECREASED them during the night.

  • "He will have a '12-hour slump' with decreased o2 sats" -- I called in 12 hours and sats were steady.

  • "His kidney function is great . . . but we will have to increase his lasix to help him pee by tomorrow" -- they DECREASED the lasix during the night.

  • "His swelling will be worse tomorrow when you get here, his eyes may be swollen shut" -- his coloring AND swelling were even BETTER by the next morning!

  • "Furthermore Dr. Bradley will not even discuss closing his chest until Day 2"--but the very night of the surgery, Dr. Bradley had said at 10pm when he called to check sats -- if "trunk edema" (torso swelling) was still that low and schedule permitted, he would close his chest Day 1 post surgery!

Tuesday, June 1, 2010

Surgery is FINISHED PTL!!!!!

Super Brandt is on his way back to PCICU . . . approx 1 hour 'til we can see him again. We are overwhelmed by God's goodness!!!!!!!!!
Just got 1/2 way done update on Brandt's surgery...this one says he is doing VERY well instead of just "well"!!!

Surgery Update 2 "I have called Brandt by name"

We have gotten two pages from the assisting nurse in surgery so far. Surgery was underway, Brandt was stable . . . around 9am. Just heard that he is on the heart/lung bypass machine now, doing WELL, still stable...

We were able to have precious prayer time with a dear friend of the family before they wheeled Brandt to anesthesiology. The anesthesiologist had just explained a little of what Brandt's poor little body is going to go through . . . unknown to him of course . . . but they first give a medicine that paralyzes him to get him intubated, and his body temp has to be cooled to half its normal degrees for the heart/lung bypass machine to completely stop circulation during part of the actual procedure. Plus opening his little chest, and extensive swelling and bleeding following that are expected but still risky. Dr. Bradley answered my specific question about Brandt's aorta without batting an eyelash, as my dear husband put it . . . I asked him if the size of Brandt's aorta (2.2 mm) poses enough risk that he thought there was ANY possibility he would get into the procedure and not be able to complete the necessary incision and patch. (We had read they like it to be 4mm for surgery). He answered with one word . . . NO. This confidence really helps, even while our mommy and daddy hearts hurt for all the invasive trauma to make his life possible without the prostoglandins. So knowing this is what he's headed to . . . I needed these verses that Glenn read to me and to Brandt for his time today:

"Fear not, for I have redeemed you; I have called you by name (Brandt), you are MINE.
When you pass through the waters, I will be with you; and through the rivers, they shall
not overwhelm you; when you walk through fire you shall not be burned, and the flame
shall not consume you.
For I am the LORD your God, the Holy One of Israel, your Savior!!!"

Surgery Today May 25 7am

I'll continue Brandt's chronological posts later, but for today, here's a reminder of his Norwood Surgery @ 7am today June 1. Dr. Bradley's quiet confidence reassured us God will use this talented man's hands as he begins repair of our son's defective heart. God has already done miracles in stabilizing him to this point. The surgery is estimated for 6 hours plus another hour of stabilization in PCICU before we can see him again, but we can see him briefly before he leaves for surgery. Please pray specifically for a sure hand for Dr. Bradley and his team and no complications as Brandt comes off the heart and lung bypass machine. "For where two or three are gathered in my name, there God is in the midst of them!!!!!"