Follow-up Follow-up

Why do I feel like shit after every meeting with a Neurologist? Seriously. It feels as though Dr. S has sucked my essence right out of my body. She was a new Neuro for us. Younger than Dr. Hippie from the NICU... probably about my age. She was pretty. She had hair that gets washed more than twice a week; eyes than have slept longer than three hours at a time this year. Her mouth was a black hole that espoused words I knew were coming but never wanted to hear. And then there were the bad surprises.

Things I knew were coming: William is showing spasticity in his legs. They are scissoring and are certainly affected by his brain injury. He is not attending the midline like he should be at his adjusted age and his head control is still not very good. His movements were described as "mirror movements"- his left and right sides move in unison. At this point he should be having more reciprocal movement.

Bad surprises: Dr. S thinks he is having seizures. William breathes very fast and yawns a lot. The doctor thinks that the yawning might actually be a form of seizure. Also, the worst news, William's head is not growing as fast as it should. Absolutely the last thing I wanted to hear. For those who do not know, poor head growth = poor brain growth and a poor prognosis for his cognitive abilities.

Diagnosis (for now): spasticity
Future testing: EEG on May 3, MRI on May 3

Not looking forward to that MRI. It will be his first. I'm not sure I really want to know what it will tell us.

I'll admit it

I am walking a fine line psychologically lately. I'm sure that it is partially due to exhaustion from my recent illness and the illnesses of my children. And then there is William's first Neurology follow-up on Friday morning looming out there. Certainly doesn't help.

Mostly, though, I think I am having a hard time finding balance these days. William's extreme need for holding, bouncing, rocking, singing has left me little time for my precious Margaret (or my husband or myself). I can see in Margaret's eyes how much she misses me and how sad she is sometimes when she wants to play/cuddle/just be with me but I can't because William is screaming his head off. I miss her so much. She has even started pushing me away now when I do have time to spend with her. She will whine and try to smack me until I leave her alone. Makes me so sad.

And William's appointment... Let me just say that I love William's (Margaret's) physical therapist. She has moved her schedule around so that she can go with us to the Neurologist on Friday. I know that this is a wonderful thing to have her want to be so involved with his therapies. But, honestly, it kind of scares me. Yes, I can tell that he has issues but it makes me wonder if he is very severe for the PT to care about coming so much. I am just going to hope that this is because she genuinely cares about us and not because she is super concerned about his future abilities.

Developmentally, William is doing okay for his age, I think. He does have tone issues. And his legs are already scissoring. But he can lift his head and chest up during tummy time without relying too much on his his high tone. He has started to swipe at toys when he is on his back. Lately, too, when he brushes his hands on something, he grabs (always misses) and brings his hands towards his mouth. One day a week or so ago, he actually got his thumb in his mouth (with some side lying help) and sucked it like mad. Ever since, he has been trying like crazy to get his fist to his mouth. His head control is still not the best but I'm wondering how much that has to do with his vision. When he is on his back, he tends to look to the right or left instead of holding his head at midline. He CAN do it, but I think that since his vision may not be the best, he doesn't have any motivation to hold that "hard" position.

Vision wise, he seems to have improved over the past couple of weeks. He doesn't whip his head around as much any more and he seems to be able to find my face some of the time now. I still have to make noises to get him to look for me, but he at least can see where I am. Every now and then, he will even look at my eyes.

Margaret floored me a few days ago when she walked across the room. She hasn't done anything close since... hopefully soon. I think that the antibiotics she is taking have made her feel not-so-hot and she has been a bit less active. When she gets better, I hope that she will be up to more walking. Her snail's pace has me always on the edge of my seat.

... I will add pictures later when I have a few more minutes to spare...

Fifteen Blankie Day

Margaret is a Blankie Girl. She doesn't have one particular blanket that she loves, rather she loves all Amy Coe flannel receiving blankets (sold at Target). She has about eight of them which is good because she likes to have a clean one whenever she has a nap or goes to bed. We keep them on a shelf under her changing table so that she can get a new one whenever she feels like it. On days when she is feeling bad, she will get two or three blankies and carry them around with her. I can usually tell how sick she is by how many blankies she has with her.

So last week, the plague started. Margaret was hit first and hit hard. She was the most miserable I have ever seen her although her only symptom at the time was a fever. Tuesday she came out of her room carrying a record seven blankies, a huge pile. For the rest of the week, she felt better but still not great. Her fever subsided and became nasal congestion and a nasty cough. Today, she is showing that her ears are hurting again. It is a four blankie day for her.

Mommy got the plague second. Same thing as with Margaret, a fever (102.5!) and achy all over. Now I've got a nagging cough and nasal congestion. The first couple of days, I felt worse than I have in a long, long time. But now I'm down to about four blankies.

Poor William is on his second or third day of the plague. He is having a hard time. Throwing up every feed and all his meds just makes him feel even worse. Add a terrible diaper rash and you just have a miserable little baby. I wish Margaret's blankies could make him feel better. He'd need about seven, I think.

I'll be so glad when this passes. Summer can't come fast enough.

Grief

After William's diagnosis, I was completely annihilated. There were several days that I had to give myself a pep talk every time I needed to do anything. My need to care for Margaret is what kept me functioning on any kind of level at all.

The day the Neurologist told us he had PVL, David and I had shown up at the NICU early. We knew that the ultrasound from the previous day had shown abnormalities in his white matter and I wanted to speak with the Neurologist in person about his diagnosis. I could see the surprise in the Neurologist's eyes when we walked in as she was preparing to examine William. The director of the NICU was also there; he had been the one I talked to the day before about William's ultrasound results.

The funny thing is that I can't remember a lot about what the Neurologist said. What do I remember? I remember crying. I remember my husband crying. I remember the look of sadness on the director's face (he is also a Neonatologist). I remember that the Neurologist was acting very nervous/uncomfortable. I remember the group of nurses quietly watching and listening to the scene in front of them. I remember there was another Mom with her baby in the pod with us at the time. Her baby was a tiny, tiny one and had been on the vent for a little while. She flashed me a concerned half smile that clearly said she was sorry about whatever it was that was going on. I remember hating her and her "perfect" baby. I wanted to scream at her. Then, thankfully, I remember William's nurse urging me to hold him after all was said and done.

Since that time I have been grieving the loss of my "normal" son. I know there are supposedly five stages of grief and I can say that now I'm firmly in the "bargaining" stage. It is different that I would have anticipated. No, I'm not making deals with God.

My experience is that I am weighing what would be "good" or "bad" as far as his outcome. And depending on my mood, the day, the second, things can get moved back and forth in my mind. In my mind I explore every iteration of his potential disability and try to decide if that is better or worse than the last scenario I thought up. It is enough to drive me crazy as there seems to be no limit to the outcomes I can imagine. I imagine that I can live with the "good" outcomes but not the "bad" (I know this isn't really the case, though). At this point my "good" scenario is spastic diplegia cerebral palsy, limited field of vision but okay acuity, cognitively okay. I've recently added "wheelchair" to the "okay side" in my brain. The cognitive outcome possibilities are where things get dicey for me.

In addition to this bargaining, I am also constantly on the lookout for "signs" that he is going to have problems with his legs, his arms, his vision. I wish that we hadn't found out about his PVL until he started falling behind... it would have been nice to have time to enjoy him without all this weighing on my mind.

Most of all, I just wish someone could tell me how much he is going to be affected by his brain injury. But no one can. Not even a best guess. And that drives me batty.

Three Things

Three things have recently made a big impact in the life of my daughter. At least she thinks so...

First, we have Squiddo. I had been eyeing this toy for a little while and asked my husband to look at it when he went to the store last weekend. Yeah, he came home with it. I just think it is so cute! It is a neoprene "squid" with a zipper container as a mouth. Inside the mouth you store four "squid baby" train cars that hook together by magnets. Also included are tracks for the "train" and a rope/magnet device that you can use to pull the cars on the track.



Margaret LOVES Squiddo. She frequently carries him around and they have many adventures. He also gets lots of hugs and kisses. Sometimes in the evening when I am cleaning up, I'll hide him in a place that she is sure to look so that I can hear her squeal with delight when she finds him! The Squid is also good for tummy time for William. It is big and bright enought that it gets his attention and motivates him to lift his(giant)head. I love this toy.



Second, we have our new play pool. Margaret is a water girl. Bath, sink, rain, sprinklers are all causes of celebration and this pool has put her over the edge. She absolutely loves it, especially the squirt-y parts and the slide. I love watching her in it, playing until she shivers. And she still cries when we take her out. Yes, it is already summer here!



Third, is Margaret's new toddler bed. Since she doesn't sleep in her crib, we decided to take it down and get her a toddler bed. She doesn't know what to think of it yet. And I'm unsure about how to get her to sleep in it, but she certainly is enjoying climbing in and out.



Putting it together was big fun, too.