So as you might be able to tell from past posts, if you’ve read them, I blog most when I’m in pain. When things are going well, I don’t feel the need to vent. Many have asked for an update, and I feel bad that I haven’t provided one in some time. The thing is, we had a few good weeks, and when things went south, I’ve spent just about every free minute either at the hospital or taking care of my kids at home.
Nevertheless, here’s an update. With pics.
So my last post was done from Natalie’s hospital room, and I ended with the news that #4 was going to have his shunt put in. The reason I was pretty stressed about that was because the neurosurgeon had told us back when Natalie was still great with child that he would stall putting in the shunt for as long as he could. He said that when the head comes out into the air, sometimes the air pressure would make the hydrocephalus change. Maybe #4′s body would figure out how to fix it. So he would schedule the surgery, if #4 *really* needs it, for say, five days out, and then watch him closely every day for an opportunity to cancel. He wants to drag his feet so because once you have a shunt, you always have a shunt, and he wouldn’t want to ‘condemn’ someone to that fate if they didn’t really need it. So when the Dr ordered a CT scan, and then reviewed it, this same ‘drag-my-feet’ doctor scheduled the surgery to be within the next 24 hours. That wasn’t really a foot drag, but a ‘we-have-to-do-this-as-soon-as-possible-because-it’s-that-bad’ situation.
After the surgery, #4 had bed 22 in the NICU. They found that later that evening he was already having a better time eating. Before he couldn’t really work out the coordination required to suck, swallow, and breathe properly. After surgery, he started eating like he was a pro. He had dropped down to 4 pounds, 3 ounces, and looked like a sick, defeathered chicken (sounds bad, but I love him like this. I also wouldn’t be happy if he wasn’t doing well — he such a fighter!!). So they were supplementing his breast milk diet with a calorie-packed formula. I call it the bacon fat and mashed potatoes formula. He healed up pretty well, and went home five days after the surgery.
Here’s an xray of the shunt:
And this will be important later on, here’s the extra 3 feet of drain line in his tummy:
They give him the extra three feet so he can grow to be taller than me and still have the drain where it should be.
At home, we started to really get to know him. He’s awesome. Tiny. And he’s as cute as anything you’ve ever seen.
We had a schedule of feeding him, pumping, changing, etc. I noticed that every night he’d wake up around 9:00 or 10:00, and then stay awake until about 2:00 in the morning. Nat was still recovering from her exciting C-section, so I’d send her to bed every night and stay up with the little man.
If he’s awake, he needs to see a face. He will fuss and fuss if he can’t see someone. I would hold him and he has to be able to see you.
I could lay him out on the blanket, and if I didn’t lay down next to him, he’d fuss. I could then lay down next to him, and still look up at the TV, but so long as he could see me, he was happy.
Then one night, I noticed that he wasn’t himself. He was fussy when he normally wasn’t. He wouldn’t eat more than a few swallows. And if I could get him to relax enough to close his eyes, he would whimper with every breath. It breaks your heart when you think a baby is in such pain that they whimper with every breath. I also felt like his posterior fontanel was bulging out quite a bit. I stayed up with him until about 3:00, growing increasingly concerned, and then I was exhausted and had to go to bed. I woke Nat and said there was something wrong with #4. She felt great because she had been asleep for about six hours, and got up with him. She took him downstairs for a bath, which #4 loves. I heard him scream through the whole thing. Ugh.
The frustrating thing was this — I didn’t know if #4 had a problem with his shunt or his head, or maybe he just had really bad gas. You parents know what I’m talking about. Sometimes a baby has gas and can’t resolve it, or they’re constipated and can’t get a poop out or something. They can’t tell you what’s wrong, they just respond that they’re uncomfortable. With every other child, I know when they’re this fussy that it’s something like that, so I bed their knees, I bounce them, I try to tickle the gas out, etc. With #4, I do all that, and I wonder if I’m just barking up the wrong tree. ‘Cause he’s got a whole different game going on in his head.
I eventually fell asleep, and in the morning, Natalie came to wake me and agreed that something was wrong. She felt that the lumps on his head (where the shunt is) was swollen, and asked me to verify. I couldn’t really feel a difference, but I trusted her. I called the neurosurgeons, and they said they couldn’t really diagnose him over the phone, but they recommended we bring him to the ER. I didn’t want to take him up if he just had gas, so he said I should take him to the pediatrician and he could diagnose it better. I called the pediatrician’s office and told them we had to come in that morning. They agreed.
We got in when they just opened their doors, and the doctor took a look at #4 and immediately said there was something wrong. He didn’t like the swelling at the site (Nat was right), and didn’t like the posterior fontanel. He said to take him to the ER at Primary Children’s, and that we should go right now, and that we shouldn’t stop on the way.
Can you get a more clear message that it’s time to go? Nope.
Away we went, having just had the shortest Dr visit ever. #4 had been crying and fussing for over 12 hours now, and he wasn’t letting up the whole way to SLC. He had to be exhAUSted. We got to the ER, and the neurosurgeon resident came and saw him. Yep, something is wrong, and we’ve got to pull the shunt out. He took a sample of fluid from the swelling (leaking) site and from the shunt directly for testing. They tried to put in an IV, but #4′s little limbs were loathe to offer up a good vein. The nurses had to call the IV team. They came, closed the blinds, pulled the curtain, turned off the lights, and pulled out a powerful light to shine through his arms.
Sorry I don’t have pictures, I wasn’t in a photo-snapping mood at this time. Looking back, it would be so much better to illustrate what was happening with pictures.
They got the IV in eventually (after the little room was filled with 8 different people from the IV team), and told us to sit tight. We sat. A few hours later the resident neurosurgeon came back in and said that #4 had an infection in his CSF (Cerebral Spinal Fluid) and the shunt would need to come out. They would treat him for the infection and eventually put the shunt back in. In the interim, he would have a EVD (External Ventricular Drain). Hours later, they finally took us back to the OR so they could do the procedure. They said it would take an hour or so.
I sat in the OR waiting room with Nat for two hours. I was losing my mind, sure that something had gone wrong. When the Dr showed up, it turns out something HAD gone wrong, but it was all ok now. So remember how #4 had an extra three feet of drainage tube? Somehow during the three weeks since his initial surgery, his tummy, organs, and whatever shifting and turning we did as we cared for him got that line twisted into a knot. When they went to pull the drain line through his skin, it caught on something. They pulled a bit, but it wouldn’t budge. So they ordered a quick Xray. Here’s what they found:This knot was cinched around a part of his intestines. Now, the cinching came from when they tried to pull it out. But if they hadn’t, it was still wrapped around his intestines, and as he grew, it could have caused SERIOUS damage down the road. Dead bowel? That’s a real compromise to your standard of life.
So how amazing is it that they were able to find that? Had #4 not been in with this infection, we never would have known! I know it sounds strange, but I really think we dodged a very nasty bullet with this!
So, now #4 has an EVD. It’s not as tidy looking as a shunt that puts a lump on the side of his head. This is more…sensitive.
It has been determined that the infection #4 had(s) is a staph infection (Staphylococcus aureus). I’m told there are two kinds of staph infections, and they’re referred to as MRSA and MSSA. The second letter is the important part. R is for ‘Resistant’ and S is for ‘Susceptible’, meaning the staph infection is either easily treated by antibiotics (S) or not (R). #4 has MSSA, and he’s doing fantastic.
Being in the hospital, he’s visited daily by the neurosurgeons. Because he has a staph infection, he’s visited daily by the Infectious Diseases team. Since he has a VSD and a PFO (did I tell you that already?) he had an electrocardiogram while in there and now he’s on the pediatric team’s daily roster as well. They say his VSD is closing (it’s in the muscle wall) and the PRO will likely never close, and they say 30% of the population has an open PFO and rarely ever know about it. We’ll see. Regardless, #4 is a popular little boy.
He’s been in there for two weeks tomorrow (Wednesday). They called and said that ID (Infectious Disease) has green lighted internalizing the shunt on this Saturday. I actually ran into one of the resident neurosurgeons last night (Monday) as I was going in for my daily visit, and he said they’re going to try and talk ID into letting them do it Thursday, so #4 could recover Friday and come home for the weekend. That would be cool, but me and my girls have tickets to see Harry Potter Thursday night.
This has been stressful to be sure. I hate to say it, but your body kind of acclimates to a constant pressure. Your mind learns to move within a tighter space. I find I’m losing a bit of my short-term memory because I’m often thinking about #4 and what he might be going through (and on the inside, I feel it’s a higher priority that whatever my mind is letting go of right now).
I’ve learned something interesting from #4′s doctor; Dr Riva-Cambrin won’t talk about two days from now. That’s too far into the future, and anything could happen between now and then. He’ll talk about what the plan is for today, and what is slated to happen tomorrow. But two days from now? Who knows. At first this was kinda frustrating (as if this whole experience wasn’t so) because I want to see the big picture. I’m not afraid of spoilers at all. I seek them out. If you or anyone knows what’s going to happen, I also want to know. The good Dr isn’t very fun in that respect. When we were meeting with him before the delivery, he wouldn’t say how or when things would happen. I thought it was so he could protect himself or just be encouraging to us at the time (for now, just enjoy the pregnancy and get some rest). Now, I see that it is kinda to protect himself from false expectations, but it’s really because he doesn’t know what’s going to happen, and he’s ok with that. It’s taken me some time to do the same, but I have to cede control of things once in a while. I have no power to control if #4 has a problem. We can do all we can to prevent one, but this infection was completely out of our ability to control. I could not have told you Tuesday that #4 would have another surgery Wednesday. Or the next Saturday. You just have to take it all one day at a time.
So my little man will have another brain surgery this week (likely). That will be four in the first six weeks of his life. What a little stud! I doubt I could recover from all that. And look at me — I’m over 6 feet, I’ve got enough fat I could easily last a winter (maybe two), and yet this little 6-pound ragamuffin is showing me how to be strong. Maybe it’s easier when you don’t know what it means. You just do it.
I love this little guy!