Update on Baclofen

We started giving William Baclofen last Thursday. This is a drug to help reduce his spasticity. We are ramping up the dosage from 2.5mg a day to 7.5mg a day over the span of three weeks. My goal in starting this treatment is to help him have more use of his hands.

It has only been a few days on a very low dose but I am being asked if I see a difference at all yet. My husband says he sees no difference. But I think I do.

He, by no means, is grabbing or playing with toys. But I think he is able to get his arms out of his super stiff extension more. He is bending ever so slightly at the elbow now in order to grab my hair when I eat his belly. (nothing like hypertonic grip on the hair!)

Another change that I didn't expect is that his mood has improved dramatically, especially 30 minutes or so after his dose. Why? I'm not sure. I'm thinking that part of his crying and crankiness was due to discomfort in his muscles. Perhaps the spasms and hypertonia are quite uncomfortable. I don't know anyone with moderate/severe hypertonia to ask about this.

Also, he is vocalizing a lot more. Is it because of his improved mood or because of decreased spasticity in his mouth??? I guess I'll never know.

So far, I am not seeing any extra floppiness in his trunk or neck. I'm hoping I don't since he has a hard time with head control as it is.

So that is what is up with the Baclofen. I am hoping that with our next dosage increase, he will gain more function of his arms... keep your fingers crossed for him!

AhOww...

Because my Mommy-heart was having problems with the doctor's diagnosis of seizures after the (quite experienced) EEG tech told me that she didn't see anything concerning, I decided to seek a second opinion regarding William's seizures. (Not to mention the prodding I got from all your comments... thank you!)

This second Neurologist (Dr. Hippie from the NICU) said that she does NOT think that he is having seizures. She said his EEG was abnormal but that is to be expected with the scarring that is evident in brain based on the MRI. She wants us to take him off the phenobarbital.... hooray!!! The doctor did say that with his type of damage and location of brain scarring, she does expect that he will have partial seizures down the road, age 2-3. We will cross that bridge when and if we get to it.

None of our Neurology appointments, however, are purely good news or really even mediocre news. This one was no exception, unfortunately. I did get to review William's MRI with the doctor while we were there. No super big surprises, I guess. Bilateral diffuse PVL with ventricle enlargement (right side much worse than left). Moderate amounts of brain scarring (left worse than right, ironically). Thinning of the corpus collosum (kind of goes hand in hand with the PVL). And the worst news, cerebral atrophy. The doc says this isn't terrible, necessarily, and that even a term infant's brain isn't fully developed at this stage. She checked William's reflexes and found that his reflexes were not "horrible" and noted that he was tight through his legs but even tighter in the arms. When she put him on his tummy, he held his head high and then promptly rolled over... I was so proud! William did keep his hands fisted the entire visit but this is unusual for him. I think he did it because the doctor was just messing with him so much.

At almost 3 months adjusted, developmentally, William still seems to be doing okay. I wish his head control was better but he is swiping at his toys very well now when he is on his back. I think he will soon grab one! Because his arms are so tight, he has trouble getting his hands in his mouth but, WOW, he wants to do it so much! I think if I can keep him looser like how the Neuro stretched him out, he will finally be able to eat his hands.

But, best of all, William is now cooing. He has one "word" that he loves to use and really likes to "converse" with me. He says "AhOwww" and then I'll say it and then he will repeat with a big smile. He seems to have a great time doing this over and over and over again. I know I enjoy it.

Dr. Hippie told me that she has a "handicapped" child. I had been told this by someone else but would have never dared to ask her about it. I would love to talk to her about her experiences raising her son, finding therapists, dealing with school issues, having a career, etc. But I feel I need to wait before I get too personal with her. Our relationship is likely to be a long one; I've got plenty of time.

There is so much going on in my life right now I would love to blog about but I am having trouble finding time. It is the end of our insurance year June 30 so we are packing in as many appointments as possible. Very time consuming.

Dang it

Just got a call from the Neuro and she says that William IS having seizures. We start the Phenobarbitol tonight.... :(

Magic Motrin

I get my last dose of Motrin (for stopping contractions) at 5 tomorrow morning.... I'm terrified that they are going to come back and I won't know it! Keep your fingers crossed for me!

Whose Cervix is THAT???

Today has been a busy day for me.

Started my second 3 hour GTT at 6:30am.... much better test when the staff comes to you and you can just continue whatever you were doing.

Perinatologist rounds.

OB rounds.

IV infiltrated. I kept telling the nurses that it wasn't going to last much longer but I think they thought I am just a big whiner. Sure enough.... pop... and then my arm started swelling up. So the OB just said to take it out! Yay! Now I'm on all oral meds. Still two antibiotics and Motrin.

Then I went for an unexpected TVU/S. I get them every Wednesday in the hospital, I am told.

Anyway..... drumroll, please.....
My cervical length has doubled since Monday!!!!

So it went from 0.6-0.8cm Monday to 1.7cm today! I was crying like, well, a little baby. Scared the nurses when I got back. Scared my MIL who was waiting in my room when I returned from the u/s. How amazing is that? The MFM guy said that apparently I am/was having lots of contractions and that is what has been shortening my cervix. I apparently only feel a few of them. I'm anxious to hear what my regular MFM guy has to say about it.

Thank you for all your prayers and thoughts and fingers crossed! You have helped more than you know!!! OMG, I'm so happy!

Hospital Again

Well, I'm back in the hospital. This time for the duration, I think.

I got the fast track here when I had a contraction in the middle of my tvus. The contraction completely thinned my cervix. So, before contraction I was down to 0.6cm and during I was 0.0cm. I was immediately taken to L&D where I am now.... waiting.

Right now I'm getting IV fluids, antibiotics, and something to stop the contractions. I was having them 4-5 minutes apart when they first started the monitoring... but I couldn't feel them. I think they have slowed down now but can't be sure. I've also started another 4 day round of Motrin.

The nurses are all zipping around me like I'm going to have this baby any minute. Making me nervous... AND, they have me on the clear liquid diet. Yum. I'm hungry. Somehow chicken broth just doesn't hit the spot.

I'll update again later when things are a little more settled.

No Change

Good news! My cervix has not changed for the worse since last week. I am still measuring 1.3cm without fundal pressure but 1.2cm with... up from 0.8cm last week. They are certainly going to release me today and I'm just waiting to see my doc before I know what is going on.

I will get another fFN this week even if I don't get it today- since Friday it will have been two weeks since my last one. And I'm hoping that the MFM doc I saw yesterday wrote in my orders yesterday that I could get Procardia upon discharge in case I start contracting more. We will see. I have noticed with as many doctors as I have, sometimes things get lost in the shuffle. Good thing that doc has a phone and I have a lot of time on my hands to pester a doctor.

I'll update later after things are all settled.

The Menopause

Steroid shot + Progesterone shot = hot sweaty grossness.

I have never been so hot in my life. And sweaty. I don't even want to sleep in the same bed as me.

Celestone Sweats

Well, I made it into the hospital. For now it is just for the Celestone (steroid) shots to mature the baby's lungs and to monitor me for contractions.

So far as a result of my shots, I am sweating like I'm going through menopause. Even my thighs are sweating. And I feel like getting up and doing some exercise. Other than that, I'm good. It is only been five hours or so and my usually very painful wrist is feeling quite normal. I was hoping that the dosage would be such that it would relieve some of my tendonitis pain.

Dinner was okay. I can't get what I've been craving until tomorrow for lunch. So sad that I have been craving certain dishes from the cafeteria here for a while. Trying to watch the carbs and sugar, though, since Celestone can really mess up my blood sugar and this boy is big already.

Speaking of... baby looked good. He is still measuring two weeks ahead in all areas except for his femur (thigh bone) which is measuring more than three weeks ahead. The tech asked if my husband is tall... well, yeah. And then she told me that he is really long and because of that his estimated weight is 2 pounds and 10 ounces... that is HUGE for 26 weeks.

My cervix had shortened some but am unsure of the actual measurement. I think 0.8 cm but I will ask the doc when I see him in the morning.

So sweating and hot and missing my baby terribly... that's me!