Ahh, Life...

Amazing that so much time has passed since my last post. So let me get you caught up, although most of you are connected to the Liuzza prayer hotline, so you know! At Jack's 2 month appointment, we found out that he really had not gained much weight and was slipping off the chart at 1% for weight and head circumference. Suddenly I realized that I needed to slow down and put Jack's needs ahead of Emma's for a while. I just wasn't finding the time to nurse for long periods and he wasn't demanding any more; he seemed content. Now he eats a lot more, we stay at home a lot more and he's catching up quickly at 12lbs 7oz today. His head circumference was worrisome, but the Dr. felt it would start growing when the body had more fat calories to spare. On May 13, Jack had a series of seizures and went into the hospital. A CT scan showed, and an MRI confirmed, agenesis of the corpus collosum (ACC). Basically, the corpus collosum is a bunch of neural pathways that communicate between the right and left hemispheres of the brain. So, agenesis means that it didn't grow. And that should have happened in the first trimester of pregnancy. In Jack's case it grew partially. It isn't something that will fix itself or grow later, nor will it worsen. The best thing we can do is to force the brain to find new ways around the problem. Somewhere along the line we may find delays in development in any area and need to treat that with therapy (physical, emotional, speech, etc). There is a very broad spectrum of outcomes for people with this problem and many people may not have been diagnosed and function fine in life. The immediate problem is that for Jack it's bringing on a lot of seizures. We had him on Keppra and that seemed to be controlling them for a couple of weeks. Then I guess he outgrew his dose. The Dr. kept upping the dose, but finally suggested bringing him into the ER to get a "loading dose" (a lot at once) of phenobarbital on Thursday. Didn't stop the seizures until Sat afternoon. In the meantime, Dr. Fike ordered another EEG, MRI and a spinal tap. EEG showed a lot of seizure activity near the center of the brain, MRI showed the same as on 5/14, and the spinal was totally clean. She really wanted to rule everything out that might require other treatment, and now that we have, we are left with what most people with epilepsy have, no concrete explanation. I'm thankful that he's mostly healthy. The hardest part is just living under this vague threat that he might not grow out of the seizures and that he may have developmental problems ranging from the maximum to the minimum. But that part is true of all children, isn't it?

Being in the hospital reminded me that many many children have worse problems than Jack. It is very sad to see children on the Peds unit. I can't imagine what their parents are going through. We had a shared room this time and I lucked out with a "roomie" who became a good friend. Her daughter, Emma, turns one this weekend. A simple staph infection, MRSA (so-called and feared because it is resistant to most antibiotics), settled in adenoid glands in her neck. The glands became swollen and had to be cut and drained. She got this infection from a scrape on the knee. It's a scary world when bacteria have out-evolved antibiotics, and that's where we are. Emma had a mal-rotated lower intestine when she was born and has had two emergency surguries already. I met Harmony's husband, who stays home with Emma and their 4-year old, Alexis (nickname: Lucky). He used to be a mover and has a bad back. Mom Harmony is a marketer for an apparel retailer that's HQed in town. She wants to go to med school and become a surgeon. Really nice people to sit up late and talk to while the constant parade of nurses comes and goes.

Emma's up, gotta go. Will post this now and continue soon.

Jack is All Clear!

In the end, the doctor said he has an immature liver and it would catch up without intervention. To help get rid of the billirubin he is taking Actigall twice a day. In fact, after one week his "billi count" has dropped by half. This is the absolute best possible result, so we are really relieved. More pictures will be coming soon and thank you for all your prayers!

Finally...

For those of you (moms yourself, mostly) who like to hear the whole story, here's how Jack came into the world. Monday morning at my Dr.'s appt. I was 3cm/50%. She gave me some blue and black cohosh homeopathic stuff that's supposed to bring on labor and told me to walk. Of course we were all anxious to get this baby coming ASAP but I wanted especially to have him at the Birth Center instead of TMC hospital. After 41 weeks they consider you to be too high risk and send you next door to the hospital, so I was either coming back that day or not at all. Mom and I went to the non-stress test and sonogram for fluid measurement. Both were very good so we knew we could keep waiting with no harm to the baby. After walking myself for hours and popping cohosh all day, I was getting strong contractions that got closer together. I did some baking and puttered around the house and it was time to go - to the Birth Center - yay! Just under the wire. But when the midwife checked me, I was still 3cm, and she sadly sent me home again. She gave me something to help me sleep and slow down the contractions. I spent Tuesday just recuperating from Monday's walking and taking it easy. After all, there was no hurry now we'd be at TMC. I had contractions all day about 15-20 minutes apart. In the evening they got harder and about 7 minutes apart. After 4 hours of this timing we called the midwife just to let her know and she said to come on in to the hospital. We arrived at 10pm and got checked - progress! Walked for an hour and 30 minutes. By this time my feet are killing me and my contractions are 5 minutes apart. Time to get a room! I felt like my life was ruled by timing contractions, that we'd never have a baby, that I would just go on like this forever...walking, hurting, timing... I will say that the L&D rooms at TMC are really nice and the nurse on my shift was wonderful. I took a nice hot bath. We put on some quiet music. My midwife was around all the time being supportive and making suggestions, as opposed to the OB standard of care: phone it in, show up to catch. But around 2am when I hadn't dilated much past 5cm, we agreed it was maybe time to speed things up. Breaking my water sounded like a really good idea, but the contractions that came next were way beyond my coping ability. WOW! I was begging for an epidural, crying and shaking uncontrollably. Immediately, a very perky anesthesiologist came in and did the trick while the nurse steadied me through it compassionately. I floated away on an island of bliss and we all took a nap. A few hours and a few pushes later, Jack was born! He had the cord wrapped around his neck 3 times, so his head looked like a beet. Possibly, having no extra cord kept him from moving down all that time. The cord was working fine and there was no distress according to the monitor. Which brings me to summarize that we ended up with the best combination of facility and care. I had wanted the Birth Center, but we needed the electronic fetal monitor and the epidural and, later, the billi-light, none of which are available at the low-tech natural Birth Center. But I still got to have my mid-wife there, who was wonderful. As I said before, the rooms and nurse staff were lovely at TMC, so, all in all, I'm very happy with how it worked out.

Jack tested high on his billirubin count (cause of Jaundice), which meant sleeping under very bright LED lights. His eyes were covered. The billirubin makes babies sleepy, so he's been very calm about it. They discharged us on Friday saying that the billirubin had started to go down. But on Monday we saw the pediatrician and the new count had gone back up. Today I have another ped. appt. and we'll get more extensive blood work done to see what the cause is. What I have learned is jaundice is a symptom of high billirubin that makes skin look yellow, and that symptom in itself is harmless, but if the jaundice is there it means the liver is having trouble or maybe a bile duct is obstructed. So we're anxious to know the cause and to fix it! I'll keep you posted.

Gotta go!

Jack!

Some pictures of Emma from this week

Fun Pictures of Emma from Mom/Missy

Still Waiting...

I thought I'd blog when Jack came, but, as he's not ready yet, I think I better write now! I've been enjoying Mom's visit so much. She cooks and does dishes and helps with Emma, and we have long talks during naptime. It's very nice. We're both sad that every day that passes without Jack is one less day he'll be held by his Grammy, but with chocolate and fortitude we're getting over that reality. I really was so convinced that he'd come early, so I'm feeling impatient. A due date has a two week margin of error, before or after, but the docs start to get antsy when you are late. Then there's the threat of inducing labor if you miss their deadline (based on a pretty wide estimate to begin with). I hope my mid-wife takes a different approach if we get to that point. I'm feeling the pressure!

Soon I'll post some pictures of Emma that Mom has taken.