Friday, January 8, 2016
Chris had seemed really tired lately so I decided to let him sleep in. I have to get up to pump throughout the night so I've been getting up at 6:30am to pump and then slowly get ready for the day, rather than try to fall back asleep for half an hour. And sleep he did! I finally went in to wake him up at 8:30am (I know, not REALLY sleeping in, but it is for us right now) so we could still try to catch rounds, which luckily for us start at 9:00am now. We got there a little bit late, probably a quarter after, but our bedside nurse said we hadn't missed anything yet. Something about family day or something like that? We don't really know what it is but it seems to mean the rounds start later and seem to go slower than usual.
The doctors in NICU have figured out that we actually understand what they're talking about and that we've done our research so they're starting to include us more in rounds; something they hadn't done at first. The last few days they would have their discussion on the side and then let the nurse reiterate the information in layman's terms for us. Today we felt included in the discussion which was great. They had scheduled him for another neck ultrasound, hoping to get a better look at things now that the CVL was out. The blood cultures they had sent away to test for infection had sent back negative preliminary results with the 48 hour results to come in later that day. His hemoglobin and platelet counts were still down so they were going to have the blood clot specialist come in after looking at his blood sample to make an action plan. He's still NPO (nil per os - nothing by mouth aka not allowed to eat) and awaiting permission to start feedings, even if it's just via gavage (feeding tube that goes directly to the stomach).
Chris had seemed really tired lately so I decided to let him sleep in. I have to get up to pump throughout the night so I've been getting up at 6:30am to pump and then slowly get ready for the day, rather than try to fall back asleep for half an hour. And sleep he did! I finally went in to wake him up at 8:30am (I know, not REALLY sleeping in, but it is for us right now) so we could still try to catch rounds, which luckily for us start at 9:00am now. We got there a little bit late, probably a quarter after, but our bedside nurse said we hadn't missed anything yet. Something about family day or something like that? We don't really know what it is but it seems to mean the rounds start later and seem to go slower than usual.
The doctors in NICU have figured out that we actually understand what they're talking about and that we've done our research so they're starting to include us more in rounds; something they hadn't done at first. The last few days they would have their discussion on the side and then let the nurse reiterate the information in layman's terms for us. Today we felt included in the discussion which was great. They had scheduled him for another neck ultrasound, hoping to get a better look at things now that the CVL was out. The blood cultures they had sent away to test for infection had sent back negative preliminary results with the 48 hour results to come in later that day. His hemoglobin and platelet counts were still down so they were going to have the blood clot specialist come in after looking at his blood sample to make an action plan. He's still NPO (nil per os - nothing by mouth aka not allowed to eat) and awaiting permission to start feedings, even if it's just via gavage (feeding tube that goes directly to the stomach).
The rest of the morning seemed to go pretty well. I got to hold him for two hours! We changed a few diapers, though Chris again got the worst of it. Apparently while I was pumping he went to change James' diaper and James' peed all over him! Of course daddy would be his first target. lol. So the nurse and I gave him a few tips on how to try and prevent that. But Chris is starting to wrap the diapers tighter now!
After our snuggles it was already time for lunch, and Chris had been DYING to try this place called Rodeo Burger which was across from the hospital that my dad had found on YELP with great reviews. If you know me at all you know I don't eat ground meat. Never have. The texture just really gets to me. But these kinds of places usually have chicken burgers so off we went. We almost never eat fast food, but I have to say, as far as fast food goes, that was tasty! I can never eat a whole one on my own so Chris always gets a little bit extra, but I appreciated that I didn't feel sick afterwards the way I do when I eat greasy food. We headed back to our hotel for a few minutes to relax for a bit and then we headed back to the hospital.
Matters of the Heart
In the afternoon Chris took the first snuggle shift with baby while I went to pump. After I got back Chris headed out to the parent lounge to take a nap on couch while I spent some time with Baby Burns. While Chris was gone the cardiology team came by to check James' stats and give me an update on the preliminary results of his echocardiogram from the day before.
It's amazing what they can learn from an echocardiogram. A few days ago Dr. Lindsay from PCICU had described how they were able to identify the health of the heart by listening to it's beat. Depending on when it pulsed and the pitch it sounded (high or low) they could learn about it's function. For example, they could tell James has a systolic heart murmur based on the high pitch frequency in his pulse.
But anyway, the cardiologists had our surgeon, Dr. Rebeyka, look at the images with the radiologist and found something they hadn't seen before. They were hoping that as the chest drained the reduced pressure would take some of the strain off of his heart and reduce the leaking in his tricuspid valve. Unfortunately it hasn't, and he's still showing a high moderate leak.
I've included a simplified image of the anatomy of the heart is so you can get an idea of what I'm talking about. I'm definitely a visual learner so it helps me understand better if I can see images and text.
The other issue is that they discovered a third VSD (ventricular septal defect - hole in the heart) that they hadn't seen before. Dr. Rebeyka said it was too high to be one of the VSD's that he had repaired, so it's definitely a new one to us. The issue is that it's causing backsplash in the aortic valve. So as the aorta pumps blood back into the body, the VSD is causing a vacuum effect, pulling some blood back into the heart after each pump. He also has a systolic murmur, and I'm sure that it's connected to these issues but my knowledge of the heart and it's function is still growing as I do more research so I haven't quite pieced it together just yet.
So my question to the cardiologists was, what does this all mean? Are we looking at more surgery? And when?
They have no plan in place yet and want to wait until Monday to do another echocardiogram to see if things improve given a little extra time to heal (small VSD's can occasionally heal themselves within the first 2 years of life). The possible scenarios they've given us are surgery again (hopefully to fix the VSD and tricuspid, and maybe even tie off the part of thoracic duct that's leaking chylothorax while they're in there) OR wait a few years and then go in surgically for repair, though they may not fix the leaky tricuspid.
With all these leaky valves and strain on his heart, I had to ask... will this effect his life and his ability to live actively? They started with the good news and said it shouldn't effect his development in any way... but it will very likely limit what he is able to do in terms of sports and active living.
My heart sunk. We had been told this was going to be a one and done procedure with no additional complications. I had even asked our cardiologist the likelihood of encountering additional issues once baby was born and she assured me that it was only TGA and not to anticipate anything else (which I was hesitant to believe based on the research I had done). It felt like such a slap in the face to have an active, sports focused family with a baby who can't participate. I couldn't help but think of all the opportunities he would miss out on. That the marathons he ran with me in my belly may be the only races he ever had the opportunity to run...
I thanked them for the update and after a couple minutes to just hold my baby I went to give Chris the news. I broke down. So did he. We just sat there in the lounge holding each other. We went back to baby once we had collected ourselves, but the nurse was just about to change his dressings and requested some space. So we packed up and headed to Starbucks. I'm not normally one to stress eat (or drink in this case) but I couldn't help myself this time. Don't worry, I still had my drink half sweet made with coconut milk... but I did have it WITH whip this time. We sat there in silence, processing things and sending the update to our families.
Smile
After a few minutes we started to reflect on the situation. Attitude is a choice, and we still have control over that even if we don't have control over the situation. Yes, this sucks. Yes, this is scary. Yes, we could still possibly lose our baby. And yes, this may end up having a larger impact on his life than we had been told or had anticipated. But there is no one I'd rather do this with than Chris. He pointed out that we are getting to spend way more time together than we would if we were both back at work right now. We have incredible support and prayers surrounding us. We've SEEN worse cases in PCICU. This doesn't mean that my heart isn't breaking, and it doesn't mean I don't cry, but it means after I've let myself release that stress I focus on the positives rather than the negatives.
James has already over come so much and we will raise him to beat the odds. We don't want him to focus on limitations, but to find ways that enable him to do the things he's interested in. We don't want him to feel restricted, but empowered. And we're still praying for a miracle here. Nothing is set in stone yet. Results are still in their preliminary stages.
So please, continue to pray.
"Smile though your heart is aching
Smile even though it's breaking
When there are clouds in the sky, you'll get by
If you smile through your fear and sorrow
Smile and maybe tomorrow
You'll see the sun come shining through for you
Light up your face with gladness
Hide every trace of sadness
Although a tear may be ever so near
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile
That's the time you must keep on trying
Smile, what's the use of crying?
You'll find that life is still worthwhile
If you just smile" - Nat King Cole