Friday, August 28

Exciting Times

Bryce's recovery from surgery continues to progress slowly but steadily. My hopefulness increases as each day passes and I see him acting a little more like himself. He's still pretty out of it from the pain medication, morphine tends to have that effect on people. And he's still pretty twitchy/quivery which of course worries me but doctor after doctor after nurse practioner has assured me that they aren't concerned by it. I still am anyway, but c'est la vie.

I was able to hold him for a couple of hours last night and he rested comfortably and peacefully the entire time. If I could just hold him all of the time I think we'd both be all the better for it.

He was pretty restless after we put him back and continued to flail this morning but we finally got him on his belly this afternoon and he is totally conked out now. I think he just exhausted himself.

Neurology came by late yesterday afternoon and again this morning. They are very happy with the shunt's placement and are sure it is working well. Additionally, they are very pleased with his incision sites and overall recovery. It's always nice to hear such positiveness from that bunch.

This morning during rounds everyone else also seemed very pleased with Bryce's recovery so far. He's back up to full feeds now and talk of extubation has resumed. Dr. Hodges even asked me what I thought of extubating Bryce! I was rather shocked and said honestly that I felt he wasn't ready. I think my point about his riding the vent while on the morphine was well taken and we all came to a mutual agreement that one more day of recovery certainly can't hurt.

That means tomorrow could very well be extubation attempt number three. I so hope he can do it this time around! If we can get him extubated and on CPAP then they'll start getting him to try "nippling" his feeds - taking some from a bottle. If he can get the whole suck, swallow, breath repetition down consistently than there is a good chance I may eventually be able to breast feed him. It's a long shot but I know it would be so rewarding for us both.

Well, I'll be sure to keep everyone up to date as CPAP is tried again in the next few days. Thanks for all of your encouragement over these last few hard days. We'd had so many good ones I think we forgot how bad they can be. Here's to many more good ones!

Thursday, August 27

Bryce still pretty out of it, doing some distinctly neuro-y things that have me worried but still waiting for CT scan results and neuro visit

Wednesday, August 26

VP Shunt Recovery

Bryce's VP shunt surgery was yesterday. The surgery itself was excruciating - for me. It took much, much longer than all of the other surgeries as they had to remove the two existing subgaleal shunts and then place the new ventriculoperitoneal (VP) shunt. The new shunt has a line that runs just under Bryce's skin all the way down to his belly where it will divert the excess cerebral spinal fluid not being reabsorbed in his ventricles, where it does on you and I.

Here is a great article, with illustrations, explaining VP shunts.

The surgeon said that everything went really well and they didn't have any problems during the procedure. Of course, that is only half the battle. The other half is hoping he doesn't get any sort of an infection from the shunt, which could be very bad, very quickly.

Dr. Lee, the neurosurgeon, said that usually infection will become evident within in the first couple of weeks and the threat of infection is almost none after six weeks. So, we'll be watching Bryce closely for higher oxygen needs, fever, lethargy, etc. Please keep baby Bryce in your thoughts and prayers. He has been through so much already, I can't stand the thought of him getting an infection after all of this.

Sometime in the near future Bryce will also have his first CAT scan. The docs will be looking at the placement of the shunt in his brain. Dr. Lee hopes that he was able to shunt both ventricles but apparently won't know for sure exactly where it is placed until they can see a CAT scan. I am, of course, weary of the procedure but also anxious to see the results. There is a possibility that the shunt is in only one of Bryce's ventricles and that the other will continue to swell as they both have in the past. If this is the case then we'll likely have to go back through this in the next couple of weeks for a bilateral VP shunt. Please God, no.

I am putting my best foot forward, trying with all of my might to be strong and positive for my sweet baby boy. But it's been a real challenge over the last 24 hours. I won't lie, or as Jason might say, I won't sugar coat the truth - I am having a hard time with all of this. I just have this awful feeling in the pit of my stomach that I can't shake. I want so badly for all of this to go well, for Bryce to come through this stronger and healthier, ready to take on the next challenge. Maybe wanting that so badly has me scared to be optimistic?

Monday, August 24

Musings on Reason

So tomorrow is the day, the day Bryce gets his VP shunt. As I've said at least once before, we are so happy that this is potentially our last pilgrimage down to the OR. But I'm so nervous about a bigger, more invasive surgery for poor baby Bryce.

It's hard not to ask why. Why does this sweet little baby, so innocent and fragile, have to endure these hardships? Why do I have to stand there, frozen in fear, as the team of nurses and doctors wheel him into his sixth surgery in not even twice that many weeks of life?

But I suppose, no I know, that we all have pleadings of why in our lives. Sure some are more profound, some more enduring and many less obvious but just as valid.

So I pick up my head, pull back my shoulders and smack a smile on my face whenever possible. I focus on the positive. And there is so much.

The joy of holding my son before he was even supposed to be in this world. The pride of watching my husband ask intelligent, incredibly detailed questions of the doctors that I simply would never think of. The wonder of already knowing the many quirks and personality traits of a person so small and so early in his life.

Really, aren't I, in many ways, quite lucky?

I have a miracle to stare at each and every day, a miracle of my very own. Well, I guess I have to share him with his dad.

And I get the delight of sharing a little piece of him every day with all of you. Many of whom I know well and many of whom I know nothing of at all.

Staring into his at once bright and also dark eyes, seeing Bryce look back at me, knowing he now knows me as his mom, all the whys and what ifs fall into the blurry background. And what is important, what is true and known for as long as time, is clearly, distinctly right in front of me.