(No Longer) Baby Girl

I have been mourning the loss of Margaret's babyhood. She has become such a little girl instead of a baby in so many ways now. Don't get me wrong, I love, love, love this stage. She is cuddly and independent and funny... I just miss my little flirty baby. Makes me weepy to think about.



Margaret is almost walking. We are getting very close now, even her PT (physical therapist) thinks so. On loan we have been using a gait trainer to help her learn faster. She LOVES it and has walked so much with it today that we have wiped her out and she is ready for bed now at 4pm.




Because of her new mobility, we have a milestone to report: First skinned knee. She was so upset about it and so cute. And, yeah, she HATES Band-Aids.

Ophthamology Update

I took William for his ROP follow-up appointment last week. Anyone who has ever taken their child for an ROP exam knows how stressful and horrible it is for not only the baby, but the parent who takes the baby. For those who don't know, I will spare you the details but know it is one of the worst things I have had to do with either of my babies. Much worse that IVs or catheters, in my opinion.

Anyway, other than the general nightmare of the exam itself, it was a pretty good appointment.

As I expected, Williams ROP (was stage 1) has resolved and will be a non-issue regarding his vision.

What I didn't expect was the words "I don't even know that I would call it Optic Nerve Hypoplasia" to come out of the doctor's mouth. Explanation: With William's type of brain injury (PVL), there is a specific phenotype of ONH that is usually observed. During the eye exam, this is seen as a large optic cup and/or small pale optic nerves (which indicates that the nerve is not made of healthy tissue).

After the doctor examined William, I asked about his ONH. The doctor explained that his nerves are pale but there is a ring of healthy pink tissue around them and a little in the middle. She said it is hard to tell if the cups are big or not and while his nerves are not exactly normal, she doesn't know if it is really ONH. I couldn't believe what I was hearing.

Meanwhile at home, it is apparent that William can see. To what degree we won't know for a while. But he is attempting to track objects and focus. I can tell that he will have a bit of strabimus with his left eye but that is no big deal to fix, usually. I am absolutely thrilled that he can see and that he has some healthy tissue!

Atypical

Even with William's diagnosis I have been able to somewhat treat him like a "normal" baby. That's why the past few days have been so hard for me... the first evidence that William is not a typical baby has been thrown in my face. And we had to start him on medication that is not normally given to babies/children. Giving him that first dose was so very hard. I feel like a failure. I failed to protect him from whatever it was that caused his brain damage. Everyone says it is not my fault, but who else's could it be? He was INSIDE of me. I am the one who is supposed to protect him from everything bad. I failed miserably.

Happy Mardi Gras

Had a wonderful weekend! Did we do anything Mardi Gras related? Nope.

My Mom, brother, and sister-in-law were in town for a visit. Sunday my family took care of the children giving David and me a break. He and I went to a hotel, ate chili dogs for lunch, took a nap, spent some time in the whirlpool, took showers, and then another nap. It was the best gift I've ever been given, hands down. What a great day it was!

Of course, as soon as we got back to the house and my family left, it was bedlam again. Margaret would NOT go to bed and ended up staying up til almost midnight. And William started screaming even though he had been an angel all day. Figures.

Margaret has started standing and she thinks it is big fun. She would be much more successfull if she didn't wave her arms around and clap instead of using them to attempt to balance. But it is so cute, I can hardly bear it.

Year of the Pig

Piggy. Seriously, this child at 3 days old (adjusted for prematurity) is eating 24 ounces of 22 calorie breastmilk. I'm unsure how much he gets on top of that with the nursing.

I'm not sure what to do with a child that eats... this is totally new to me. William eats at least double what Margaret did at this same size and age. Yet, his growth is nearly identical to hers. All I can figure is that he is using a lot of extra calories with his screaming.

I hope his eating enthusiasm transfers to solids... how nice would that be?

Monitor Compliance

I admit it. I am terrible at the apnea monitor. I hate the stupid thing and I don't want the extra "peace of mind" that it is supposed to give me.

William has lots and lots of loose lead alarms- usually just after he has gone to sleep after screaming for an hour or two. All the jiggling and rocking and patting causes his leads to become a little loose and the machine goes crazy. I hate it. So I turn it off not to wake him and then I forget to turn it back on. Bad Mommy.

The other night we lost power due to a drunken college student taking out a telephone pole near our house. The battery on the monitor was low before we lost power and then I couldn't charge it for a few hours after that. Can they take my baby away for being so monitor non-compliant?

I also don't like being tethered to it. I bought an awesome sling and I don't use it as much as I'd like because I would need to also carry the monitor around. Blah.

I can't wait to be done with the thing.

I can't resist

Presented for your evaluation... Margaret's version of The Evolution of Dance. As seen in the video we have her four "dances":

1. The booty bop
2. The clasped hands side to side rock
3. The "casting a spell" (my absolute favorite!)
4. The leg kick

(music courtesy of Dressy Bessy)

Some good news, finally!

A picture says a thousand words...

Tummy time: check out that head control!







William is cross eyed here because he is trying to focus on a rattle we are shaking!






Yeah, I cried.

Home again, home again

William was released from the NICU on Saturday night with no answers other than he does not have NEC. That is good enough for me! I have doubled his Miralax dosage as per his Ped and he has had a few successful poops today. The very strange completely desiccated poop "flakes" seem to be mixed in with his now normal looking breastmilk poop. I have a referral to a pediatric GI and I plan to take William for a consult as soon as there is an opening.

All the good pooping seems to have made William a little happier. He actually let me sleep two consecutive hours last night without holding him. It was lovely.

What I want to know is how in a week's time he has gone from sleeping on his own in the NICU to not being able to sleep unless he is on my chest??? Is it just a rough transition for him? Or does he have my number already?

Margaret seems to be warming up a bit to William. She now approaches him with a grin, uncovers him and touches his body (much more gently than she touches the cat!). I'm greatly relieved.

Say goodbye to the NICU forever???

Nope.

William has been re-admitted. Over the past few days his fussiness had turned into hours upon hours upon hours of screaming (not crying). I took him to the Ped and coerced her into ordering an Xray of his bowels... results: not normal. Dilated intestines and possible NEC.

Right now all his bloodwork has come back okay. They finally allowed him to eat a couple of hours ago. Tomorrow, more Xrays, consults, etc. I'm hoping that they figure out what is going on with him and we can get the heck out of here SOON! Keep us in your thoughts!

Question for all the Mommies...

Does Chocolate Pediasure make baby's BM very dark brown/black?

Thank you for any info.

Love,
Paranoid Mommy

Google Find

While using my pumping time to google "colic", I found this post in the blogisphere:
Acquainted with the Night.

This is exactly how I feel about my little girl growing up (but written much better than I ever could).
(Preggos be warned... tear jerker!)

OMG

I am beyond exhausted. This baby boy is F.U.S.S.Y. I'm only getting about an hour and a half total of sleep a night because he gets started screaming at about 11pm and goes until about 6-6:30am.

Our Ped has switched us to Prevacid and I'm hoping that in time it will help with some of his screaming with his bottles... I'm pretty sure that his little esophagus is raw from the refux and will need extra time to heal before he starts feeling better.

He also is having a VERY hard time (no pun intended) with his BMs. In the NICU, he was pretty much glycerin dependent and it hurt him terribly to go because it was so firm. I know that he had his last BM in the NICU on Wednesday and he has been trying to go since we brought him home. He started Miralax on Saturday but it can't soften what was already in the colon so we have to wait for this first BM to pass before the Miralax makes him more comfortable.

I just want a little sleep...!!!

And Margaret isn't adjusting to the baby very well at all. She seems downright depressed even though I have spent every moment that I'm not trying to get William to settle down with her. We've had lots of one on one play time and plenty of cuddles but she still just seems so sad. It breaks my heart and I feel so guilty. Am I a bad Mommy for having William while she still needs me so much? Do I have the skill to be a good Mommy to two babies so close in age? I'm having serious doubts about myself these days...

I know everyone wants to see pics of our new addition. So here are a couple from the last few days.

He's Home!

William made it home today at about 2 pm and proptly started refusing to take a bottle or nurse... because he knows this is the one thing that really freaks his Mommy out! It's like Margaret whispered in his ear what to do to upset me. I'm trying not to get all wound into a big ball of nervousness and trying to remember that this is a big change for him, too. Hopefully tomorrow he will decide that I am okay for food.

Margaret doesn't have much interest in William other than wanting to be held while I am holding him. She also seems annoyed when he decides to cry. Other than that... nothing.

Today was the day for David's scheduled elective surgery. So he is totally out of commision for the next 48 hours. I can tell he feels bad for not being able to help out.

Tomorrow morning is Margaret's 18 month well baby visit. I'm hoping the shots don't cause her to be uncomfortable for the rest of the day.

I'll put up pictures tomorrow! ...exhausted already...