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Saturday, June 30, 2012
Friday, June 29, 2012
update on baby.
So, after Hank got his pacer, we moved back up to the NICU. We missed it there! Since it has been so long since I have updated, I will just do a short summary.
Hank sat on the ventilator for 8 days after surgery, then he was extubated on the 26th (last Tuesday). Since then, he has done really well on his CPAP and has been able to wean down with little problems since then.
Hank, minutes after extubation. Still likes his paci!
While he was on the ventilator Henry got more inhaled nitric oxide to help improve some pulmonary hypertension that he had developed again. Apparently, it helped because on his last heart ECHO, it was gone.
We are slowly getting him back to his full feeds that he was on before his surgery. Until then, he gets his nutrition through his IV (a PICC line), which hopefully will come out this weekend.
Here is Henry for his 13 week pictures. Looking pretty good. He is now in size 1 diapers instead of preemie. He is almost regular.
Hank got his crib back soon after he was extubated. His biggest gripe now is the poor kid is having a rough time going without his pain meds. Unfortunately, he gets a bit cranky once his morphine wears off and sometimes needs an extra dose of ativan to help keep him calm. This will get better for him and is pretty common for these little kids.
We are so excited for him to come home!
birthday boy. better late than never.
We celebrated Drew’s second birthday, a whopping 3 months late. He had his cousins there (minus Nick – who we missed). What a fun little get together.
Wednesday, June 20, 2012
hank’s big day
After the entire cardiology department met last Wednesday to discuss Henry’s case, we learned that they were ready to take him for his permanent pacemaker placement. Exciting and scary at the same time for sure. Hank’s surgery got scheduled for Monday, June 18. He was to be the 2nd case of the day, at 2:30 in the afternoon.
Prep for surgery started the night before. Hank got moved from his crib to a warmer bed so he could transfer down to the OR with no problems.
He was made NPO at 5am the day of the surgery. Since he couldn’t eat, they placed an IV and gave him a dextrose solution to keep his blood sugars up. Poor baby got really hungry throughout the day, so much that he had to be sedated with Ativan to keep him calm.
With dad, enjoying his paci while waiting to get called to the OR.
Right before the surgery, Dr. Phillip Burch, the same cardiothoracic surgeon that did Hank’s surgery before came and spoke with us. Essentially, he told us that he would do two main incisions. First, in Hank’s chest, where he would do a sternotomy (crack his sternum open to reach his heart), and put his pacer leads there, on his heart. Second, he would make an incision down on the left side of his abdomen, through the fascia and muscle and make a pocket. This is where they would put the actual pacemaker. From there, the wires would go through his tissue up to his heart. He told us they would loop the wires near the pacemaker, and near the heart to account for the length wise growth he would be making over the next months and years. Dr. Burch reminded us that Hank’s surgery was essentially open heart surgery and told us of the risks, but felt that Hank would do pretty good. We felt really comfortable with Dr. Burch doing the surgery as we have been told by many that he was very meticulous, careful, and his nickname was “gifted hands”. I think those things were true.
Hank, right before the OR. His last shot with the external pacer box.
Hank went to surgery at about 3pm. Right before he went, the anesthesiologist told us his plan, and that he would be intubating (putting in a breathing tube) Hank, then extubating (taking out the breathing tube) right before he left the OR. I was a bit skeptical about that, just because Henry is not fast at weaning from any type of respiratory support. Then, off he went. They called us in the surgical waiting room every hour to give us updates. In general, we were told what part of the surgery they had completed and how he was at the time. We heard a lot of “he is comfortable and warm”, which was good. He finally was complete with his surgery around 6pm, and Dr. Burch came and told us everything went well and that Hank looked good and the surgery was a success so far.
The pacemaker they decided to put in Hank is a St. Jude’s Zephyr Model 5820.
Photo from: http://www.medwow.com/med/pacemaker/st-jude-medical/zephyr-dr-5820/33538.model-spec
Some info about his pacer from the product website. http://www.sjmprofessional.com/Products/US/Pacing-Systems/Zephyr-Pacemakers.aspx
Zephyr DR 5820
- Dual-chamber, rate-responsive pacemaker
- 43 x 44 x 6 mm, 18 g, 8.5 cc*
- ACap™ Confirm threshold management
- Beat-by-Beat AutoCapture Pacing System
- Ventricular Intrinsic Preferenced (VIP) Feature
- Stored electrograms (EGMs)
- AF Suppression algorithm
- AT/AF diagnostic suite
- Auto Mode Switch algorithm and diagnostic suite
Instant Follow-Up with the Merlin™ Patient Care System
Zephyr devices feature the ACap™ Confirm algorithm and the Ventricular AutoCapture™ Pacing System that automatically test patient thresholds. Additionally, the device automatically senses intrinsic signals and lead impedances, resulting in 100% of follow-up completed outside of the clinic.
Upon interrogation, the Zephyr device displays the last measured sense and capture threshold results obtained automatically within the last 24 hours (from both the atrium and ventricle in dual-chamber models). Once a day, the pacemaker automatically measures intrinsic P-wave and R-wave activity and displays the last test results in combination with a weekly P- or R -wave trend. Results are displayed with follow-up EGMs for quick verification of the test measurements.
If the clinician chooses to perform the test during an in-clinic visit, preset test values will facilitate prompt testing.
Dual-chamber models also provide the ability to reduce ventricular pacing, via the Ventricular Intrinsic Preference (VIP®) feature, and to maximize flexibility in managing AF.
I’m not really sure what all of that stuff means, but over time, we might understand it.
After surgery, Hank went to the Cardiac Intensive Care Unit (CICU), which I will admit, I was not thrilled about. Nothing against them, we are just used to our home in the NICU with all our regular nurses that know Hank well.
Hank right after surgery. So full of fluid. 
Poor baby Hank. Here’s what he gained during and after surgery.
- A brand spankin’ new pacemaker, my favorite thing!
- A new heart rate to boot. (100 bpm for now).
- A chest tube to drain fluid from the incision in his chest.
- A breathing tube (hopefully to come out soon), with a lovely ventilator
- A ton of fluid weight. Currently being removed by diuretics (lasix and diuril) and albumin.
- Antibiotics for 48 hours (cefuroxime)
- TPN (nutrition through his IV)
- A few IV lines
- An arterial line
- A foley (has since been removed)
Here he is about 24 hours after surgery. Looking much better.
Since being down in the CICU, my outlook has changed a bit. Maybe due to the never ending supply of slushees!
(I totally need one of these machines)
No really though, they have done a fabulous job here, weaning him from his ventilator and making sure his pacemaker is behaving correctly, which it is! We have been really grateful for his great care here.
So, here is Hank’s last chest x-ray. You cannot see the pacer box in the picture (it’s down on the bottom right side), but you can see the wires and leads. The top lead is the atrial, the bottom is the ventricle. You can all see how the wires are wound on the left side of the picture to account for his growth. Since they went in through his sternum, you can see how they close it up with wires, which stay there forever. It’s really amazing what modern medicine can do. I know I am grateful!
More updates to come!
Tuesday, June 19, 2012
12 weeks old
Last Friday, Mr. Hank turned 12 weeks old. Hard to believe really.
A few things on his 12 week birthday.
- He is actually 42 weeks gestation.
- He weighs 3250 grams = 7 pounds 2 ounces
- He has rolls on his arms and a double chin
- He has been so good at weaning on his high flow oxygen (down to 3.5 liters at one point)
- He finally got approved for his permanent pacer surgery.
We are nervous and excited. Another big step!
More Swimming
Saturday, June 9, 2012
shower time
My mom and I got to throw a baby shower for our good friend Tammie. I don’t have any pictures of the shower guests or guest of honor, but I did take some pictures of the food. I thought the shower was fun and I’m so excited for Tammie and her family. Hank will have a little buddy to play with on our street!
Beautiful iris from Tammie’s yard
The spread
Baby cupcakes
what about hank?
Hank is 11 weeks old!
Hank is a tank! He now weighs 3060 grams. That is 6 pounds 11 ounces. He has been gaining so much that his doctors have taken him from 27 calorie milk to 24 calorie. Ha. Can you believe he weighed 2 pounds 9 ounces when he was born?
Hank’s cardiologists are starting to watch him more closely. Maybe he will be ready for his pacemaker soon?
Hank’s lungs are doing better! Just yesterday, he was taken off of his CPAP and put on high flow oxygen. What a surprise for us. He started at 6 liters yesterday, and now today, he is at 4 liters and going strong. We are excited. Though, we have been here before. Hopefully it sticks this time.
I have been gone to work in Logan all week, and I came back to a different baby. We are happy for his progress.
Check out his double chin!
Still can’t wait till we get to go home!
night time and nap time
Drew has now been sleeping in a toddler bed for 8 days. Really, it has been a fairly easy transition for him. He doesn’t get out of bed much except to grab a toy, hat, or book and run back to bed. So, normal bedtime is 7:30 pm and usually he doesn’t go to sleep until 9:30ish. Not too bad. At least he stays in his room.
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