(James at 2 weeks old :) )
Wow. To say the least, when I think back on the last few days I am overwhelmed. Sometimes I don't even know how we got here. When every new doctor or nurse comes into the picture, they all ask us to start at the very beginning and describe James' birth. So I guess that would be the most appropriate place to start.
I went into labor a little after midnight on October 29, 2010. My water broke at home about 2 and half hours after my first contractions started. Matthew and I headed to the hospital after calling our OB, where the resident on duty told me that I was not in labor, nor had my water broken. It took several hours to convince her that I was actually in labor. After all, James was 6 days late (and I was totally counting!) and if I wasn't in labor then I sure as heck needed to be. My contractions were lasting about 6 minutes long (yes, I'm not joking) and James began making D-cells and his heart rate would drop from 150-160 down to about 60 bpm. About 20 people ran into the room at this point, told me I was having a c-section NOW and that I didn't have a choice. (I had planned on a natural delivery with no meds- HA! get the epidural people, it's good stuff!). James ended up being sunny side up (with his face up instead of down) and had the cord wrapped around his neck several times. Thank the Lord for a wonderful Dr, Dr. Joseph, who brought James safely into the world. I moved to Dallas 5 months pregnant and came to Dr. Joseph halfway through my pregnancy. Matthew and I had interviewed several different doctors but really felt like Dr. Joseph was who we needed to have. In retrospect, that is one of the best decisions I have ever made.
So when James was born, he weighed 8 lbs 1 oz and was in the 50-60th percentile for weight and height, and in the 15th percentile for head circumference. We were fine with this, and the doctors assured us that even though his head was small, it would grow and be fine. Matthew's family has large heads (most of them can't even wear adjustable baseball caps!) so we just assumed James had been handed my genes on that one. James is my mini-me in almost every way, so that made sense.
I don't have all of his stats and percentiles on me, but over the next few months his head began to grow larger in the percentiles while his weight and length decreased. At his 4 month check-up his head circumference was up to the 40th percentile. At 6 months it had jumped to 95th. I asked about this at the appointment but I was assured that mis-measuring by a fraction of an inch could be a huge change in the percentile. They were sure his head was growing, and was fine. His check up was sometime in early May (again, I don't have the date on me).
One night in early April, my brother and I were cooking out. I was inside and about to take some rolls out of the oven. I grabbed the Bumbo chair and put it on the counter to set James in while I grabbed the rolls out of the oven. I turned around for 2 seconds to take them out, and James wiggled out of the Bumbo and fell from the counter to the hard tile floor. I immediately screamed, picked him up, checked to see if he was breathing, and then called the Pediatrician. Our Ped's office has great hours- 8:30 a.m. to 9:00 p.m. M-F and Sat mornings. Thank the Lord that they were there. They told me to bring him in to be checked out just as a precaution. On the way to the Dr. James began throwing up in the car. By the time I made it to the office, he had thrown up twice. The Dr. on call checked him out, and watched him for an hour to make sure he didn't have a head injury. She said that if we got home and he threw up again to take him to Children's Hospital to have a CT scan. James and I had been home about an hour and he threw up again. We immediately drove to Children's and got a CT scan. Several hours later, the CT scan came back and showed no damage whatsoever. They said he might have a mild concussion, but they were sure he would be perfectly fine.
So approximately one month after the fall, James' head had doubled in percentage size.
On Tuesday, June 14th, James woke up and he nursed like usual. A few minutes after nursing he threw up everything he ate. I thought that he might just have some drainage or a bug as he and I had been at Vacation Bible School the day before. He threw up one more time that afternoon, and really just wanted to spend the day laying on my chest. I thought that maybe I had eaten something that upset his stomach (he's still breastfed) and that once it got out of my system he would be fine.
The next day, Wednesday, June 15th James woke up perfectly fine. We went to VBS and then when we got up he threw up again. He had no temperature- and seemed ok afterwards. He is getting 2 top teeth in so then I thought maybe he was just teething and that was making him sick. I gave him some tylenol and that seemed to help.
Thursday, June 16th James woke up fine again. We went to VBS and then I had an appointment right afterwards. James projectile vomitted about 20 minutes into the appointment. I left and came home where he threw-up 3 more times. I called the Dr. and they made us an appointment for an hour later that night. We saw one of the Peds on call, and he said it was probably a summer bug that had been going around. He said that it would last 3-5 days and we were likely on day 3. We just needed to keep him hydrated and it would pass.
Friday, June 17th James threw up 7 times. I tried to give him apple juice, pedialyte, milk, anything I could think of but he wouldn't keep anything down.
Saturday, June 18th I called the Dr. at 8:30 when they began taking phone calls. They said to come in at 9:30 and see the Dr. on call. We saw that Dr who said that James was dehydrated and needed fluids. They sent us to Medical City Hospital where James received IV fluids and zofran to keep him from throwing up. He seemed to perk up after he was hydrated and were were sent home a few hours later with a prescription for zofran that would last through Sunday. They also confirmed the diagnosis that he had a summer-time virus, although we did not see a doctor until we were discharged.
Sunday, June 19th James threw up once, but kept everything else down. He was incredibly lethargic and only wanted to be laying on my chest asleep. None of his toys interested him, and he was starting to have a little trouble standing when I stood him on my lap which he normally loves to do.
Monday, June 20th we had run out of zofran and James began throwing everything up again. I called the Ped. again, and we saw her Monday morning. She confirmed that he had a summer-time bug, and that the reason he wasn't "doing his tricks" like standing was because he didn't feel well. She said to give him pedialyte to keep him hydrated.
Tuesday, June 21st James was throwing up still. He hadn't had a wet diaper in about 6 hours, so I called the Dr. office. The nurse called back and said to syringe-feed James pedialyte and see if he could keep that down. I gave him a teaspoon of pedialyte every 5 minutes for several hours which finally did the trick. He seemed hydrated, so she said just to keep doing that.
Wednesday, June 22nd James was still throwing up and he had only pedialyte in his system. I called the nurse again, and she said to come in to the office. Our Ped. said that although he wasn't fully dehydrated, we should go to Children's Hospital and get some fluids. They would also run a few tests to see if we're just missing something. She called ahead and got us a bed so we could skip the emergency room.
James and I left straight to go to Children's, and Matthew met us there. I think he started his time-table at this point. The resident on duty immediately noticed a few signs that were worrisome. James' eyes were sunsetting, which means that they can't look up at you and drift downwards. They also noticed that his head was abnormally large and he was having trouble holding it up. They said we needed a CT scan, and thankfully, could compare this current CT scan with the one that he had in April when he fell.
It's so amazing to me how God works. When James fell in April, I was a wreck. I had so much guilt for putting him in that silly Bumbo seat. I kept re-playing it over and over in my head, always asking myself why on earth would I put him in that so high up? What was I thinking? For months I have had the image of him falling and me not getting there quick enough in my head. It's made me doubt my abilities as a mother. But now, that CT scan is proving to be a critical piece in James' future. Because they can compare his current CT to the one in April, we know how aggressive this tumor is. We know that as of April, there was no mass in James' head. That's how the doctors already know how aggressive this tumor is, which likely makes it cancerous. The odds of James having that first CT scan to compare are so unrealistic.
When the resident mentioned that James might have hydrocephalus, I began feeling that guilt all over again. It was possible that an obstruction could have been caused when James fell, and that would have created the excess water. Can I tell you that I would trade anything to have that be the case now? How I desperately wish that it was only an obstruction- because an obstruction is treatable in the sense that once they remove it, everything goes back to normal for James.
Today I said that I feel like my world completely stopped three days ago. But for some reason, the rest of the world didn't. News is still news. Everyone else's lives go on. But for our family, our world as we once knew it is somewhere so far away. I typically plan everything out. I make grocery lists for the entire week and have specific days that I do specific laundry. I make play dates centered around nap times. I used to be an event planner. One upon a time I did. That seems like a million years ago now. Now, my only plan right now is to get to Monday. After Monday I will worry about Tuesday. And so on.
I truly believe that in life, we are all given the opportunity to make choices. I didn't choose this for James. Whether God did or not is a debate I'm not going to get into. The one thing about this entire process that I get to choose is my attitude. So I choose to have the attitude that God is the Great Healer. He knows and loves James more than I can fathom. I choose to believe that. I choose to believe that James should be surrounded with a positive attitude, that all things are possible. That's why I implemented the "no crying" rule in his room. It doesn't mean that we don't get to cry. It's a grieving process. And Lord knows I cry. But I completely trust the wonderful Doctors and Nurses that are going to be operating on my precious boy. Once again, its a choice though.
As Matthew said, we are choosing not to know about percentages, odds, etc. During this time, I am choosing to only focus on things that are helpful. Knowing these things aren't helpful for me, so I just won't know them. It doesn't matter what happens 99% of the time. It only matters what happens in this case.
I am overwhelmed and humbled my the outpouring of love you have all shown for my sweet baby boy. I can't tell you how much every words means to us. I will forever be indebted to you, sweet ones, who lift me up more than I could ever imagine. Please know that I read every single word you write and they bless me in an intangible way. Your incredible faith sustains and strengthens us. Thank you for praying for James. Thank you for praying for Matthew and I. Thank you for praying for our families, and the Doctors and the Nurses. We feel your prayers, and we are so grateful that you are walking alongside us on this journey.
Thank you for being our friends, whether we know you in real life or not. Thank you for loving our sweet baby James, who is the absolute light of our world.