I know it seems like all I have blogged about lately is the baby. I do have other things in the works...but right now, this is our life...
Luke - 9 months
Stats:
Weight: 23lbs 3oz (75%)
Length: 29" (85%)
Head: 20" (off the chart - average size of a 3yr old)
Yes, you are reading it correctly. Our son is a big boy, with a really, really big noggin. Not too surprised there. All our kids have big heads. They get it from their father. Really. They get my chubby cheeks, and his giant head (and I am qualified to say "giant" head because I am the one who has given birth to them). That's just kind of the way our genes work. Of course this hasn't gone unnoticed by the doctor. Since Luke kind of had a rough start, he has been monitored fairly regularly. Sweet boy's head has been measuring completely off the charts since he was a month old. The Dr. hasn't been too worried, as the rest of Luke's measurements were hovering pretty high too (which is really pretty amazing considering everything).
However, all the changed when I took Luke in for his 9 month well-baby check. The nurse took us back to our room, and started taking measurements; weight, length and head. Routine stuff. Dr. Aldous comes in and starts asking the normal questions about development. No, Luke isn't technically crawling, but he is doing the army-crawl thing - so he's getting there. No, he can't sit up by himself. If I set him down, in a seated position, he's great. But once he's on his belly, he can't get back into the seated position. Yes, he's rolling over. Yes, he's eating solids. The Dr. listened to Luke's heart, checked his hips and all the other stuff. Then he measured Luke's head again. Dr. Aldous shook his head. He mumbled to himself, something about the measurements being right. Then he continues to ask me the same developmental/milestone questions again. It's not like anything has changed in the last 5 minutes, my answers were still the same. After he finished the second line of questioning, he told me he was concerned with the size of Luke's head. He acknowledged that big heads are normal for our kids, but he was worried about the spike in the growth pattern that Luke had been following. Dr. Aldous showed me on his computer screen. He was right. A spike, like a straight-up-kind-of -line, spike. He wanted to check and see if anything was wrong with his head and mentioned something about ventricles (not like I was really paying attention - Luke was just fine - sweet as ever). He ordered an ultrasound.
Now, to be honest, I didn't think that the test was warranted. Like I said before, my kids have big heads. Luke was just hitting a growth spurt. Why should I spend money for a needless test, especially with Christmas right around the corner? But - I have learned to trust Dr. Aldous. He was the one that was able to diagnose Luke with his swallowing/cyanosis issues as well as helping us figure out what treatments worked best with Luke's reflux. So, for peace of mind, we went to get the ultrasound done.
The cranial ultrasound was done on Luke's soft spot. It took about 20 minutes, with the technician talking to Luke, just so he would flash his dimples at her. Seriously those dimples wield magical powers. When she finished, she cleaned up his head and said, "Well, let me clear this with the Dr. (radiologist) and then we can release you".
Red Flag #1
Release me? Since when did I need to be released from an out-patient ultrasound?
The radiologist came in and had the technician get a few more shots of whatever was going on in Luke's head, as they quietly talked amongst themselves.
Red Flag #2
I began to get a little worried. The radiologist turned to me and said that there was concern about some of the ventricles in Luke's head.
What? Ventricles? What the...
"What do you mean?" I asked. She tried to explain it to me, but the sheer look of panic on my face must have told her to stop. She told me she would notify my Dr. and if I had anymore questions, then I could ask him.
Anymore questions? That's the scary part. I don't know anymore questions to ask. I don't know enough. What do ventricles even do?...
I arrived home at 12:15pm from the 10:30am ultrasound, and the Dr, not his nurse or MA, but Dr. Aldous himself called me at 12:30pm.
Man these red flags are coming up everywhere.
The Dr. explained a little more about what was going on:
The ultrasound showed that Luke's lateral and third ventricles were enlarged. (Which was surprising, given that all his ultrasounds in utero were normal). Enlarged ventricles can mean many things, most of which are scary for any parent to hear. They signify that there is a build up of CSF (cerebrospinal fluid - the fluid that basically bathes the brain to keep it protected as well as carry out the wastes produced by the brain) in the head. A medical term for it? Hydrocephalus.
Hydrocephalus, (congenital or acquired) is not "curable". It is a result from things like malformations, chromosomal disorders, cysts, tumors, blood-clots, intraventricular bleeds, stoke and on and on...Nothing good. However, not all of Luke's ventricles were enlarged - just the lateral and third, but not the 4th. This led the Dr. to believe it might be something called aqueductal stenosis. Aqueductal stenosis - is an obstruction or blockage (think slow moving drain) that is preventing enough CSF to flow through to the 4th ventricle, hence the build up. (CSF travels like a canal system - from the laterals, to the 3rd, and then the 4th). If hydrocephalus is not treated and managed correctly, ICP (intracranial pressure) can build up causing brain damage and sometimes death. Most of the time, putting a shunt in the brain to help drain the fluid is the only effective treatment.
Brain surgery.
Dr. Aldous wanted to get an MRI on Luke (which meant that Luke needed to be sedated) for a more detailed look. I can honestly say, that there was a lot to take in, and most of it I didn't understand. Well, until I googled it. Google is a necessary evil when it comes to worried moms.
I got off the phone in absolute shock. All Luke has, is a big head...no other signs, or symptoms - except for maybe his milestones. Other symptoms of hydrocephalus in babies are bulging soft spot, prominent veins on the scalp (which he may or may not have - kind of hard to tell if they are prominent because they are too big, or because he's bald and very, very white), sunsetting eyes, irritability, vomiting, and delayed milestones. His milestones are still considered in the "normal" range, but on the low side of that, which is I guess why the Dr. questioned me twice about it.
He's just suffering from 4th kid syndrome, he gets carried around too much. How can something be wrong with my baby? He's perfectly fine...right?
And then the pure panic, dread-in-the heart, mama-bear-showing-her-claws kind of Sheri came out. I wanted some answers.
Denise, Dr. Aldous's nurse, who understands the mom-heart-strings thing, did her best to get us scheduled for an MRI, which I greatly appreciate. I got a phone call from St. Luke's (yes, it seems Luke has his very own hospital - the irony) confirming the MRI for that Thursday. Three days of waiting, not too bad. But then I began to worry even more. Man, this must be serious. Not 2 hours later, I got another phone call from St. Luke's cancelling that very same appointment. The MRI scanner was down, and it would be at least 1 1/2 weeks to get the part and fix it. So I would have to wait. WAIT?!? This cannot wait. So then started all the phone calls between my Dr. and his nurse, the hospital, the peds neurosurgeon and his nurse, and me. Because Luke was showing no other symptoms, he was not technically considered an "emergency". Sure there were other MRI machines available, but Luke needs an anesthesiology team, because he has to get put under for the scan. No anesthesiologists were available unless is was an emergency. Grrr!
Finally, this past Monday (1 week since the ultrasound) I got a call from my Dr.'s office telling me that I needed to leave now, there was an MRI machine available for a one-shot MRI. From what I can tell, a one-shot MRI only takes a few minutes to scan (because it isn't a contrast MRI?). Therefore Luke wouldn't need to be sedated. So I rushed to the hospital, and they took Luke right in. They strapped him down, and the scan lasted a whole 6 minutes. He cried for a little bit, but seemed to be more enamored about the clicking noises he could hear through the earplugs. I was behind the window, looking at the screen as the images popped up. Obviously, I am not a radiologist, but even I could tell that the ventricles were indeed enlarged.
The technicians told me to expect to get the results in 24-48 hours. Great, more waiting. I feel like there is ticking time bomb and no one can move fast enough. Imagine my surprise (even though at this point, I really shouldn't be surprised), when I get a call from Dr. Aldous' office 2 hours after the scan, telling me that the radiologist had called and confirmed what the ultrasound found: enlarged ventricles. I asked what that meant, and they didn't know the details because the official results weren't in yet. The radiologist was just calling Dr. Aldous to give him a heads up. Dr. Aldous had put in a call to Dr. Cherny (peds neurosurgeon) to get a consult, as Luke is the only case that has presented like this, in all of Dr. Aldous' 25 years of being a pediatrician. But we all know how easy it is to contact a neurosurgeon, not to mention one with a specialty. Sigh. More waiting.
Wednesday, Dr. Aldous finally got the official results of the one-shot MRI: The same ventricles were enlarged. Mild to moderate Hydrocephalus confirmed. No growths detected. Suspect aqueductal stenosis - but cannot confirm. When I got off the phone I felt confused and relieved at the same time. Relieved because there weren't any significant cysts, tumors, or detectable malformations. Confused, because they are still not completely sure what is causing it.
Thursday, Dr. Aldous called me. He had finally got to talk to Dr. Cherny. Dr. Cherny felt there is definite cause for concern. And he wants to see us soon. However, from the sound of things - because it is mild to moderate - he wants to take a slower approach. Translation: We don't have to show up at the initial neurosurgeon appointment with our bags packed in preparation for surgery. HUGE relief. Dr. Aldous said he was quite surprised, as he thought Luke would need to get a shunt right away. Luke has his first appointment with Dr. Cherny this coming Tuesday. The treatment plan depends on what Dr. Cherny finds. He might want to send us to get more tests run. We might have to see more specialists to determine where Luke is with his milestones. We just don't know.
So now it is Friday, as I type this. It's the first time in almost two weeks that I haven't been on pins and needles waiting for a phone call. I have spent sleepless nights researching - trying to find someone else in the same boat as us. Trying to find hope. Trying to help Luke.
My house is trashed. My kids are worried.
I love holding my baby as he sleeps, and rubbing his perfectly round head (my favorite thing to do - he has loved it since day 1). Then reality hits me, with a stab in the heart. Here is this beautiful, sweet boy who is happy all the time. Here is this big boy who loves to cuddle and seems perfectly healthy, without a care in the world. He has no idea. How can this be happening?
He's just a baby, so innocent.
I have cried. Trace has cried. It's hard not knowing how to fix it. I am scared. I am reminded that it's not me in control. And perhaps the hardest thing for me to admit, is I can't make it all better. As a mom, that's my job. And I don't have that kind of band-aid. My dear, sweet Luke, I am so sorry. If I could take this from you, I would.
What we can do is pray. A lot. And hope. I know the Lord loves us, he is aware of our situation. And I do know that he hears and answers prayers.
