Tuesday, December 26, 2006


I will tell you what the neurologist told us.

The PVL is independent of William's IVH (brain bleed). It is also not a result of his prematurity and that the injury occured sometime in utero around 26 weeks. It is terrible to know that he may have been better off if he had been more premature.

His PVL is not a mild case and he most likely will have cerbral palsy... 95% likely. She noted that a motor reflex of his (sorry, can't remember which one) is already abnormal and indicates that there is motor involvement with his brain injury. She said we need to hope that there is no cogintive involvement.

So that's it, in a nutshell.

Friday, December 22, 2006

It didn't go away

I was hoping that somehow when I went to bed all the bad would go away- that I would have been dreaming this whole time rather than it being my new reality.

Yesterday we got some very, very bad news about William. In the lottery of things that Preemies are at risk for, this is among the top of the list of things I never wanted to hear in the same sentence as his name.

William has periventricular leucomalacia, or PVL. It is a rare brain injury that usually leads to cerebral palsy. I can't believe I had to write that. I am so absolutely terrified for my boy, for my family.

We have yet to speak to a specialist about this and hope that what William has is the milder form of damage. But I am frightened by the way the neonatologist spoke about it yesterday... that it is the most devastating type.

Please pray for my son. Please pray for my family.

Wednesday, December 20, 2006

William is back on CPAP.

Saturday, December 16, 2006


This morning we took our sweet baby girl to the mall for a picture with Santa. That's right. Germ phobic Mama takes still recovering preemie to the mall to be handled by someone who has handled other germ-bags all day long! My need to have a picture of my dressed up daughter screaming in the hands of a bearded stranger won over the paranoia.

We were almost successful getting the classic screaming baby photo. But Margaret only screamed for about 30 seconds and they didn't take the picture fast enough. (I guess most parents want their kids to smile?) So the resulting picture is of Margaret as stiff as a board looking slightly uncomfortable and a little blotchy. Santa, on the other hand, looks completely evil. I couldn't have hoped for a better picture.

(will post pic as soon as I can get dh to scan it... how did I go from being able to program in C++ to not being able to operate our scanner????)

A rough patch

Mr. William is through his "honeymoon" period at the NICU and has started working through some typical preemie issues and giving his Mommy a hundred heart attacks.

William had to be put back on a high flow cannula after his room air trial. He started to have lots of apnea/bradycardia episodes and is continuing to have many of them a day. I'm hoping this is all short lived and we can get on with the business of feeding and growing.

His weight is up to 3 pounds and 11 ounces so he is still gaining well. He has also stopped having any problems with the HMF, thank goodness. I really didn't want to have to battle about that. I am very lucky that our hospital does not release babies on fortified bm... so he will be weaned to non-fortified milk before discharge.

I'm watching the timing of his a/bs carefully to see if there is any connection between them and his feeding... just in case he is refluxing.

One more week until his next cranial ultrasound. He should also begin attempting to nipple (bottle feed or breast feed) next week. I'm hoping these things go well.

Margaret, David, and I have all been sick. I am starting to feel better now but Margaret's lungs still sound pretty bad. David has started his third round of antibiotics today.... I'm hoping that he starts to feel better soon.

Sunday, December 10, 2006

Monkey Update

Our little one continues to do very well. He is having his first room air trial today and like all his others, I am hoping for the best but will not be shocked if he has to go back to his low flow cannula.

The fact that he is even on a low flow cannula at this point is shocking to me. He was only 8 days old when he made the switch. Margaret took 9 weeks before she could go to the cannula!!

I'm also impressed that little boy has had no a/bs to speak of. The nurse last night said that he hasn't really hit that point in his stay, yet... that William is still thriving off maternal blood. The truth is, I don't really remember before Margaret's apnea period. I just remember her having 20+ a shift and it really scared me. I suppose I should go look up when she starting all her a/bs. But I am really hoping that baby boy (and Mommy) gets to avoid most of that.

Will has also started to gain weight consistently. He was born at 3 pounds, 7.7 ounces but lost down to 3 pounds. He is now up to 3 pounds 4 ounces. Only a few more days until he'll be back at his birth weight if he continues to gain like he is.

We got the results of his cranial ultrasound yesterday and found out he has a grade 1 bilateral IVH. Although this is not bad news, I was certainly dissappointed. I was praying for the "normal" result.

The only thing that has be slightly concerned lately is William's reaction to the human milk fortifier the docs are adding to the breastmilk to up the calories. They tried to take him to 24 calories but he ended up with bad residuals so they backed him down to 22. He is still having some residual but it is within their limits. The reason I'm concerned at all is that M was so sensitive to cow's milk proteins. I am worried that W is also sensitive. I went ahead and cut out dairy when he was born but now he is getting it in the HMF. If he continues to have residuals on the HMF (he had none ever with straight bm), I am thinking of asking to the docs to either not fortify or to use something else. I know we want him to fatten up but I am worried about his digestive health and his comfort. Any advice from other preemie Moms out there?

Tuesday, December 05, 2006


In the midst of all the craziness we have managed to put up the beginnings of our Christmas Tree. So far all we have on it are the lights. But no matter, Margaret thinks it is the best thing on the planet right now. And when I picked her up from daycare today, she was plain chatty and pointing to the Christmas trees they had set up.

Another big hit in our household lately is a fire in the fireplace. Lots of squealing, pointing, and "talking". Yes, we are always close to make sure that she doesn't actually launch herself into the fire... which she seems determined to do!

Her biggest most impressive "trick" lately is her ability to pick letters out on random things like on a Gatorade bottle. And she can do some letters both capital and lower case- particularly "A". Her best letters are A, M, O, and sometimes B. Margaret blows my socks off every day.

More pictures....