Home!

We brought baby Bridger home from the hospital yesterday afternoon. One week after surgery. That was the "best-case scenario" given to us prior to surgery. We were prepared to have to face a much longer hospitalization. We are all tremendously happy to have him here and, as you can see from the pictures, he is pretty ecstatic to be home.

It is hard to believe that last Wednesday he was in the midst of open heart surgery, his life dependant on a team of medical professionals, on machines that took over his breathing and the pumping of his heart. There were countless monitors, medications, blood products, tubes, catheters, and drains- making him unrecognizable. Now he is home and smiling and playing and it makes the experience of last week seem somewhat surreal.

We are forever grateful to his team at Children's and also forever grateful for all of the prayers and support he received. While we are in absolute awe of modern medical miracles, we are equally in awe of the power of the prayers and positive energy he received from near and far.

More on his recovery soon...

2/22: 5 months old!

5 months old

Today Bridger is 5 months old. It is hard to believe that so much time has passed since he was born. It has certainly been a whirlwind. Bridger spent his first Christmas here on the 9th floor. Uncle Pat spent a sleepless Xmas Eve with Bridger- B was withdrawing from all the sedatives he received to prevent him from extubating himself while he was on the ventilator. He is one feisty guy. I'm very much looking forward to having Xmas at home this year.

Bridger had a fantastic day. He is incredibly happy- smiling and talking up a storm. He loves to have conversations with the nurses. He really seems to have turned the corner- only a couple of doses of Tylenol today! He had an echocardiogram today which showed that the pressure gradients in his aorta and pulmonary arteries have greatly improved. He is off of the oxygen completely and it is looking very promising that they will send him home tomorrow.

I am anxious to be home with all the boys. And very hopeful that Bridger has a healthy future ahead of him!

2/21: I've made it out of the ICU

9th floor

Bridger is out of the CICU! We moved up to the cardiac floor this afternoon. Bridger was very fussy throughout the day and I couldn't quite figure out what was wrong (oxycodone didn't help) but he took a great nap in the late afternoon and woke up happy as a clam. I think that he must have been overtired from the constant interruptions of the ICU. He is starting to eat better and seems much more content. His EKG has improved and he definitely seems to be feeling better. His nurse tonight commented on what a trooper he is... he said that many babies need supplemental tube feeding after heart surgery. He truly is a trooper, we are so proud of him. He is off all IV medications and is on just a tiny bit of oxygen.
I spent the night with Keller and Becket last night and got a full 8 hours of sleep- that hasn't happened since Bridger was born. I forgot what "rested" feels like! Rock slept with Bridger and slept in 1 hr increments.... hoping for a better night tonight!

2/20: post-op day 4, feeling more like myself

2/18: post-op day 2, puffy

2/17: post-op day 1

2/16: a few hours post-op, a lot of equipment for a little guy

2/16: pre-op, a few moments before heading off to the OR...still smiling

Improvement

All in all, Bridger had a pretty good day yesterday. The diuretics worked- he is finally looking like himself again! His chest Xray showed that the fluid around his lung has gone down and he seems to be breathing easier. He is off of the Nitroglycerin drip because they realized that it wasn't making any difference in his EKG. He had an echocardiogram this morning but I haven't heard any word on what it showed. Bridger has had so many echos- about one every 2 weeks since he was born- and he seems to be very used to them. For them to be accurate he needs to be very still and amazingly he is very cooperative.
The plan today is to back off a bit on the diuretics, decrease his oxygen, and continue to work on feeding. He was giving me a lot of smiles yesterday and seems to be getting back to his old self. He does have episodes where he seems very uncomfortable and can't settle down, so we have been giving him oxycodone 2 or 3 times a day. It seems to get him feeling better and he is able to relax and nurse for longer periods. He is wanting to be held most of the time- which is typical for him- but they gave him a little musical aquarium thing that goes in his crib and he loves it, will lay there and watch it and it really calms him down.
If all goes well today, we will hopefully be transferred to the cardiac floor tomorrow. One step closer to going home! The CICU is wonderful, but both Bridger and I are growing tired of the constant blood pressure checks (every 15 minutes), alarms, and blood draws. Rock spent the night with the big boys last night and I may go home tonight to be with them. Hopefully I will upload some recent pics of Bridger tonight.

Full of fluid

Once he was settled, Bridger had a good night. We went out to dinner with Thom, Denise, Keller, and Becket and when we left, Bridger was quite content. When we returned he was having a fit. I'm not sure if he just worked himself up to the point where he couldn't settle down or it was that was hurting. I think that it was probably a combination of both. He ended up getting some Morphine and Tylenol with codeine and he settled down. I slept in his room last night and we actually both got a decent night sleep.
His chest Xray this morning showed an increase in the pleural effusion- fluid around his right lung. He is still very puffy- looks much chunkier than he actually is- so they are being more aggressive with the diuretics today. He is back on the high flow oxygen to help decrease his work of breathing. We are hopeful that the diuretics work, otherwise they may need to put a chest tube in to drain the fluid from the pleural space. They stopped his Nitroglycerin drip this morning but then noticed that his EKG showed ST segment changes again, so he is back on the drip.
The good news is that he hasn't needed any narcotics today. He sat in my lap for over an hour, very calm and alert, playing with his froggie toy. I even got a quick, little smile out of him. I can tell that he is uncomfortable from being so full of fluid but he doesn't seem to be in pain. He is not nursing too well but hopefully when some of the fluid is diuresed he will do better.
They tell me that this is pretty typical for the post-operative course and we can hopefully expect things to improve over the next day or so.
It seems like there has been several emergencies with other babies today and several sterile procedures. We are holed up in the room while they do their thing.
Hopefully we will have good news to report later on!

Out of the bay and hopefully out of the woods

Bridger did well last night. So well, in fact, that they moved him out of the "bay" and into a regular room here in the CICU. It's nice to be out of all the hustle and bustle and have a bit more privacy. The nurse practitioner came in this morning and removed his 2 chest tubes and pacemaker wires. He had a complete fit, despite getting Morphine, but now that the chest tubes are out I can finally hold him! He settled down pretty quickly once he was in my arms and took nearly 3oz from his bottle. I am hoping to try and nurse him for the next feeding. He is a baby that LOVES to be held, rocked, bounced, etc. so I think he will be much happier now. Good for both of our anxiety levels!
He still looks quite puffy and isn't making much urine, so they have him on a lasix drip (a diuretic to remove the excess fluid accumulating in his lungs and tissues). They aren't planning to wean him off of any of the cardiac drips today because of the episode he had yesterday. The plan is to keep things as is and allow his heart and vasculature to adjust to the changes from surgery. It sounds like he will be in the ICU for a couple more days. He is off the high flow oxygen now and down to just 1 liter.
He is a pretty big hit here in the CICU- known for his feistiness but also for his cuteness (obviously!). He definitely has the fight in him and some day I look forward to reminiscing with him about this roller coaster ride that has been his infancy!
We are looking forward to seeing Keller and Becket tonight. It is Grandpa Thom's birthday (happy birthday Grandpa Thom!) and we are meeting up for dinner.

Misbehaving

Bridger seems to have developed a knack for misbehaving when Rock and I step out for meals. While we were at dinner, he pulled out his IJ- the central line that was in the jugular vein in his neck. It was obviously bugging him and despite the fact that it was sutured it quite securely, he yanked it right out. It's great that he has the strength to do that but not so great to pull out the access through which he was receiving multiple meds. Unfortunately, he has very difficult veins to access. Yesterday it took 3 anesthesiologists and multiple unsuccessful attempts at peripheral and central access before they were able to place the IJ and femoral line.
Luckily, the nurse was able to place an IV in his scalp pretty quickly but he needs additional access for all the drips he is getting. The cardiac intensivist was planning to place another femoral line but then decided that she didn't want to compromise access for future cardiac catheterizations and also it would require them to give him some sedation, which they are trying to avoid. Soooo, she is now attempting to place an external jugular line- a peripheral IV placed in the jugular vein in the neck. Success! Looks like little Bridger will be sporting some wrist restraints from now on!

It was a pretty rough day for Bridger. His work of breathing increased to the point where he was really retracting and he had an episode while I was feeding him where he became very sweaty and purple-looking. They were worried that he may be developing some pulmonary edema, but his chest xray didn't look too bad. It is likely that his heart is just recovering and trying to adjust. He is getting some higher flow oxygen now and is looking better than he did earlier. I guess his condition this morning was a bit too good to be true. We have been prepared for setbacks and I am sure he will get through this soon enough. Thank you for all of your continued support and prayers. We hope that Bridger has a calm, restful night.

Ups and Downs

Shortly after Rock and I returned from lunch there was a huddle of doctors around Bridger's bed. The cardiac intensivist explained that because Bridger was doing so well, they may have been "overly enthusiastic" about stopping some of the cardiac drips. His heart monitor showed some ST elevations after they stopped the Nitroglycerin drip, meaning that his coronary blood flow may have been compromised. Because the repair of his supravalvar stenosis was so close to the coronary arteries, they have to closely monitor the blood flow. There may be some swelling at the surgical site or it may be that his coronary arteries are simply adjusting to the lower pressures now that his stenosis has been repaired. He is back on the Nitroglycerin drip and they may be starting another drip called vasopressin. He still looks good, though he is working a bit harder to breathe. I have been able to give him 2 bottles which he did great with. His femoral line, arterial line and catheter were removed. They are continuing to keep a close eye on him... I suppose this is just par for the course, considering he is only 24hrs out from surgery.
Never a dull moment in the CICU. This morning there was a code blue down the hall, luckily, after some commotion, we heard some crying, so I think all went well.
We had a visit from the chaplain and Bridger received a beautiful blessing. We are incredibly grateful for the support that everyone here at Children's has offered us.

Extubated

When we arrived to see Bridger this morning we were pleasantly surprised- breathing tube is out and he was happily sucking on his binky. He had such a great night that they decided to extubate early. His nurse even gave him a bottle -first she offered Pedialyte which he refused, but then she gave him a bottle of pumped milk and he happily drank it all. He is definitely starting to wake up more and more. The nurse said that he practically climbed out of the crib when she went to change the dressing on his femoral line and 4 people had to hold him down. I'm not surprised. He is a strong, feisty little guy and he loves to roll over and attempt to crawl after his brothers. Funny, considering that Williams kids typically have low muscle tone and delayed motor development.
The plan for today is to hopefully get him off of some of the cardiac drips. He still has about 8 different drips going, an arterial line, 2 chest tubes, a femoral line, internal jugular line, and foley catheter. With him beginning to move around, I'm hoping they are able to pull some of these lines/drains before he decides to pull them out on his own. He looks comfortable but wakes up occasionally and cries. It is nice, though, to hear his cry since the last time he was intubated for 5 days and didn't get his voice back for a couple of days.
We continue to be amazed by his progress.

Champ

Bridger continues to do incredibly well. He is starting to breathe on his own (over the ventilator) and his nurse is weaning him off of some of the cardiac drips. His blood pressures have been quite stable and everyone seems pleased with his progress. The pacemaker wires will likely come out tonight and they are even talking about extubating before the 24hr mark. Unbelievable how well he is doing. His nurse has been giving him Tylenol and Toradol (a non-steroidal anti-inflammatory) around the clock with Morphine once in a while when he looks uncomfortable. He is definitely starting to stir a bit, stretching out his legs and he briefly opened his eyes.
Since he is doing so well, we are going to head down to our "sleep room" and try to get some decent rest. I think that I got an hour, at best, last night. They have several sleep rooms for parents whose kids are in the ICUs- basically windowless rooms with a sofa bed and bathroom. Far easier to sleep there than in the ICU. Since we are in the open "bay" we have to leave the unit during shift change in the morning and evening. It's a bit of a bummer to miss the change of shift report because so much information is conveyed. Now I really understand the push to have nurses give report at the bedside. When I began working, almost 8 years ago (?!) we were always tucked away in the nurses station or conference room for shift change report. There was a lot of resistance to give bedside report but it really does makes sense. Otherwise, patients and families feel like they are a bit in the dark. Luckily, the CICU nurses are amazing and keep us well-informed.
Hopefully we will have more good news to pass on in the morning. Good night.

Bridger continues to do well. He is still quite sedated from the anesthesia but we are beginning to see a bit of movement and lots of dream suckling :). This time, his breathing tube is through his nose and it seems to be more comfortable for him. His color is much improved (he was rather blue looking after surgery because of vasoconstriction from meds). Blood pressures have been stable.

Rock and I took a walk earlier and when I returned to the unit there was a sign saying that is was closed for a sterile procedure. I must have looked a bit nervous pacing the hallways (wondering if they were working on Bridger) but one of the dads let me know that it was his daughter they were working on. She is 6 days old and had an extensive surgery on Monday. They were closing her chest because it was left open after surgery until some of the swelling went down. This family is from Durango and had to move down here a few weeks ago in anticipation of her birth. He said that she had absolutely no chance of survival without surgery-her aorta was completely interrupted. Amazing what these babies go through and amazing what the world of medicine has to offer. Some of the babies on the unit are incredibly tiny... Bridger, a peanut at 12lbs 11oz, actually looks giant in comparison!

CICU

We are now with Bridger in the CICU. As expected, he is completely covered in tubes and wires. 10 IV pumps with 10 drips- since I have never worked in critical care that sort of blows my mind. The cardiac intensivist, who we know from the previous stay, is here and keeping a close eye on Bridger. So far, they say that he is having a typical recovery. They expect some fluctuations in his blood pressure as his heart adjusts to the repairs. His chest incision isn't nearly as large as I thought it would be and considering all he's been through, he looks great. If all goes well, they may consider extubating in 24hrs. We are in the "bay" which is essentially an open space that has a curtain that you can pull. They keep the most critical patients here- such as new post-ops. It is more accessible to the staff if an emergency were to occur. He was also in the "bay" during his last stay... I think that it is a good thing that I didn't know why he was there last time, I thought maybe it was because all of the regular ICU rooms were filled but obviously it was because he was so critically ill. It's unbelievably busy here- several babies who have just had open heart surgery. Others in various stages of recovery. So far, so good. He is such a trooper. He looks quite comfortable.

Recovery

We just spoke with Dr. Jaggers, the cardio-thoracic surgeon and they will be moving Bridger into the CICU shortly. It sounds like things went quite smoothly. He did have to patch B's main pulmonary artery, in addition to the branch PA's, because it was also found to be very stenosed. They will be watching him very closely as his heart adjusts to the lower pressure gradients. We will hopefully be able to see him in about an hour. I think we are prepared- after seeing him intubated in Dec.- though this time around he will have chest tubes, internal pacemaker wires, arterial-line, etc. Excited to be able to see him soon.

Good News

We just heard from B's cardiologist and it sounds like things are going incredibly well. The surgeon has completed the repair and he is off of bypass. The cardiologist performed a trans-esophogeal echocardiogram and his pressure gradients have greatly improved. The left side of his heart has significant thickening because it was pumping against such high pressures, but that should improve in time. They are preparing to close his chest and he will hopefully be transferred to the CICU within the next hour or so. We are so tremendously grateful for the skill of the surgical team. Surgery was much quicker than what was expected and he did not have to be on bypass for very long at all.

In progress

We received another update from the nurse and it sounds like everything is going smoothly thus far. The surgeon is working on patching Bridger's aorta and will then move onto the branch pulmonary arteries. Since the entire length of the pulmonary arteries are stenosed, the patch will extend the length of the arteries. We were told that Bridger may need cardiac catheterizations in the future to balloon dilate these arteries if the stenosis re-occurs. There is about a 1 in 5 chance that he will need future open heart surgeries for his aorta. Obviously, we are hoping and praying that this is the only surgery he will need. I have heard many encouraging stories from other Williams Syndrome parents whose children had surgery as infants and have not required further surgery.
The hospital is bustling with activity- the radio station Alice 105.9 is having a 36hr telethon to raise money for the hospital. Rock spotted his favorite local celebrity, 9News anchor woman Kyle Dyer. He's standing in line for her autograph. (I kid).
Thanks again for all your word of encouragement. It is an agonizing wait but we know that he is in the best of hands.

Anesthesia

Good News. We just spoke with the both the OR nurse and Bridger's cardiologist and the anesthesia induction went well. It took 3 anesthesiologists to get IV access, but they had success. He is now on the hear-lung machine (bypass) and they are preparing to begin the repair.
We will get hourly updates from one of the nurses which will help with the nail-biting waiting period. I checked in with the Cardiac ICU-where Bridger was in Dec.when he had RSV- and saw many familiar faces. The silver lining from that very scary experience is that we know that the care here at Children's is phenomenal. We also know from that experience that Bridger is a tremendously strong little guy. Just a few hours after being extubated and off the ventilator he was nursing. A day later, he was smiling. We are hoping for another quick recovery. He is most definitely a resilient little guy. More updates to follow...

Surgery

Bridger is currently in the OR- they took him back at 0730. Thankfully, despite not being fed for 4 hours, he was smiling and cooing. It definitely made for a less traumatic departure. He was engaging all the doctors and nurses, a true charmer. We should hear soon how he handled the anesthesia. Anesthesia induction is rather risky for individuals with William's Syndrome due to the nature of their cardiac defects. Luckily, when he was hospitalized in December, he was intubated and sedated and seemed to tolerate that episode quite well.
The surgery is expected to last 5 to 6 hours. It will involve a repair of his supravalvar aortic stenosis and pulmonary stenosis. The surgeon is going to "patch" the arteries with a Gortex type material.
Thanks again for all of your thoughts and prayers. We will send updates soon.