Plugging Along

We are still here just plugging along. Both babies have been sick so things got crazy for a while. I'm not even sure if I got sick... didn't have time to think about it, I guess.

We had a wonderful visit from my Mom and she surprised me by having my sister in tow. How great was that??? I haven't seen my sister since Margaret was fresh home from the NICU! There are no words to express how much fun it was having a shopping day with my Mom and Steph. I had forgotten how nice it is to have girl time. ... now I'm craving it... (Steph, please come back soon!!!!)

In not so fun news, I am having to get surgery on both my hands. I am going to try to schedule it two days after Christmas since recovery will be long and painful. I don't want to have to feel bad during the first Christmas that Margaret *may* "get it". I'm having two procedures done on both hands. First is a carpal tunnel "release" and second is to fix the extreme tendonitis in my thumbs. The pain has gotten so bad that I can't sleep at night. I can also no longer open things that twist off or grip and lift things with my hands. This poses a major problem since William isn't going to be motivating himself anytime soon. AND he is a big boy. So, I thought I'd better do this while he is still 20 pounds rather than 40. I will not be able to use my hands for six weeks. I am having to schedule grandparents to come help for weeks at a time. Thank goodness we have parents who are willing to do this.

Margaret had her first trip to the dentist a couple of weeks ago and it went well. As I suspected, she has enamel hypoplasia on her top front four teeth. So we have to be extra careful with the sweets, juice, etc. And, of course, we need to use flouride toothpaste for extra protection.

Margaret has been going to "school" for about a month now and she loves it. She doesn't even care when I leave in the morning! And before we get there, she is singing her teachers' names at the top of her lungs in the car. (this is very cute, btw) We have received lots of colored pictures and paintings and glue projects from her. Even though I would love to keep every single thing she ever does, I know this is not practical, so we are limiting ourselves to the favorite one of the week.



William... what an amazing little guy. What is he doing, you ask? Nothing too much different but the little things mean so much. We got our very first belly laugh and squeal the other day. I have it on video but I'm afraid to post it as it looks like we are really being rough with him... but he obviously loves it. He adores being jostled and bounced and tossed about. And I love the reaction I get.

He also is improving in his ability to get his fist in his mouth. He can get it there about 1 out of 3-4 tries but then he gets so excited that he gets spastic and loses his hand. If he can just happen to be quick enough to start sucking, he calms down enough to keep his hand there for a few seconds. I've seen him do this a few times and I'm always so happy for him!
Tummy time (over the boppy to keep his arms forward) is going well. The past few days he has started pushing up on his arms some. And yesterday this pleased him so much that he started his "chuckle" and "talk" while he was doing it. Usually tummy time ends because he starts moving his legs like he is crawling and does a face plant. This little boy wants to crawl. I am still trying to figure out a way to help him. I tried holding him at his ribcage, but this just causes him to drop his head and freeze there. I'll keep working on it.


I swear, his vision is getting better. Yesterday he tracked Margaret when she walked through the room. He has visually noticed the TV. I know the structures of his eyes cannot improve but I really believe that his ability to use his vision is getting better every day. We did find out at the second Ophthalmologist appointment that he is moderately farsighted and may need glasses at our next visit in six months. How cute!

So, we are doing really well here. Margaret is a sweetheart and William amazes us every day. Mommy and Daddy are doing well. The house, though, it is a total wreck! (it is one of the last things on my mind these days... )

(I wanted to add that I got Margaret's Proud Preemie shirt from http://www.brightlittlebeginnings.com .)

More Bad News

I swear, I'm just going to stop taking William to the doctor. It always seems like it is one kick in the gut after another.

I have known for a while that William's vision is not normal. But with all his swiping at toys and tracking things, I had started to get very hopeful that he had a lot of functional vision. Yesterday was William's second Ophtho appointment. It was very dissappointing. When the doctor's first question after her exam is, "Have you applied for SSI?", you just know what's coming next is no good.

His right optic disc now is appearing paler than it had before indicating optic nerve atrophy rather than hypoplasia. She didn't think it would get any worse but couldn't guarantee me that. She said that she approximates 20/400 vision with his better eye (the left) and quite a bit worse with his right. The doctor did not think that glasses would help much, if at all. Add initial signs of Cortical Vision Impairment and his visual prognosis is not promising.

So, he is officially considered legally blind now. I hate this.

Later today, I am going to post some good news!

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.... :(

This explains a lot...

My Fortune Cookie told me: Your doctor is looking unsteady because he has been hitting the gin. Get a cookie from Miss Fortune

Hard Days

Oh, I miss my baby girl and my husband so much.

Add to that a very pessimistic Perinatologist and you have a sad Mommy. I'm just trying to plug through these long days and keep my eyes on the prize. But it is hard. Very hard.

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.

Iffy Test Result

I went to the OB today and had another fetal fibronectin test performed. This time it was positive. Although I understand that a negative result is much more reliable as a way to rule out preterm labor, I am really nervous about my result. The doc said with my risk factors, history, and the fact that I am symptomatic the positive result is a bit more valuable for its predictive value. So, delivery within 14 days? I pray not.

I think part of the reason I'm so nervous is that I could tell that the doctor was very concerned.... the same doctor that never has been worried about anything. He told me to go lay down and stressed that I should call him if anything at all comes up.

My next MFM appointment is next Monday so I'll know how my cervix is looking then. The OB said I am a fingertip dilated now... I'll update when I get my new measurements. I'm actually wondering if I will be admitted again... I hope not. I've already cooked Thanksgiving dinner. (read: called in an order)

Story of a Sick Monkey

As many of you already know, our Margaret had to be taken to the Emergency Room on Friday night because she was throwing up too much. It started pretty normally... she "spit up" her bottle each time during the day but then about 6 pm (just in time for Daddy to get home from work), she started increasing the frequency of her vomiting. By 8 pm she was throwing up every 10-15 minutes... we started to see bile. When I tried to give her water, she drank her two ounces eagerly. And then she threw it up. That was when I decided to take her to the ER. I was pretty sure she was not yet dehydrated but I didn't want to wait until she was... hoping to avoid having her admitted overnight.

By the time we got to the hospital, she was throwing up every five minutes and it was bright green. Poor baby was flirting with the nurses and doctors in her precious moments between vomiting. I could tell she felt awful.

She started getting IV fluids and Zofran at about 10:45pm and we were released at 1am when all her bloodwork came back that she was not dehydrated. It was scary and heart wrenching.

The next day she got a fever and the diarrhea began. Poor baby still isn't herself. Her eating has suffered greatly and she has lost TWO POUNDS. This really worries me because a) she didn't have much to spare and b) she has her 15 month pediatrician appointment soon. I'm afraid of her "falling off her curve" because of this episode.

Yeah, and forward facing? No time soon!

Here are some pics from Margaret's first ER trip. (silly Mommy)

Sick Baby


So Sleepy


Mommy forgot to bring my blankie... but found an ER one!


Baby IVs are no fun.