That's what Dr George, our pediatric neurosurgeon, said to me last Thursday afternoon after reviewing Miller's CT scan. He said MP's brain is growing and developing and there's no new injury, no evidence of hydrocephalus. The past 6 months have been a 'wait and see' period and Miller is doing great. The doc says he would expect a child 13+ weeks premature to have some developmental delays simply due to the fact that he wasn't done cookin'. So outside of the fact that he had a grade IV IVH, we're told that they'd expect him to be in a 3-6 month old range right now. With the IVH, well, nobody knows. In the beginning there was a lot of talk about CP, but right now we're just not seeing anything. It doesn't mean he won't ever be diagnosed with at least a mild case, but we'll cross that bridge if we ever come to it. ::big sigh of relief for now::Search This Blog
Tuesday, January 1, 2008
See you in 6 months
That's what Dr George, our pediatric neurosurgeon, said to me last Thursday afternoon after reviewing Miller's CT scan. He said MP's brain is growing and developing and there's no new injury, no evidence of hydrocephalus. The past 6 months have been a 'wait and see' period and Miller is doing great. The doc says he would expect a child 13+ weeks premature to have some developmental delays simply due to the fact that he wasn't done cookin'. So outside of the fact that he had a grade IV IVH, we're told that they'd expect him to be in a 3-6 month old range right now. With the IVH, well, nobody knows. In the beginning there was a lot of talk about CP, but right now we're just not seeing anything. It doesn't mean he won't ever be diagnosed with at least a mild case, but we'll cross that bridge if we ever come to it. ::big sigh of relief for now::Sunday, December 16, 2007
No news is good news
We're moving tomorrow. This chapter's over and we're leaving our Central life behind to become West Austinites. We're very excited to begin a new adventure, now with Miller Lee in tow. Here's a photo of the house. See the bendy trees?
Well we went to see the doc last week for our sanity check and he said MP's doing great. In fact, he gained two pounds in two weeks. How this happened I haven't a clue, since at the previous visit he'd lost a pound over a period of a month or so. Miller also had a CT scan on Thursday. It was a scheduled follow up and was originally meant to be an MRI. When I called to confirm our appt I found out it was going to be another CT scan. I can't say for sure but my inkling is this is a positive thing, since MRI's are bigger and scarier and you have to be perfectly still. We somehow accomplished the scan with the wiggly worm wide awake, no sedation, no sleepy meds. We have not yet spoken with Dr. George but did get a call from his office. They used a lot of big words I can't remember, but basically it sounds like there's nothing really new or worrisome. But we'll see. We have an appt on the 27th.
With the exception of Miller's new and not improved schedule, things are great on the homefront. He's happy happy joy joy most of the time. He still loses it when we put him in the carseat but he's getting a teensy bit better. Teensy. He's trying really hard to crawl, but his arms & upper body are not ready yet. Miller however, is ready. So he army crawls and scoots on his belly and whines. He loves to stand on our laps, and when we pick him up his kicks like crazy. Late at night I'll get him up once to feed him and he'll hold his bottle. He's starting to reach and grab, and he'll bat something out of the way if it's bugging him. I'd have to say on the awesome scale it's a 10. I promised myself I would try to allow myself forget at least some of what they said in the hospital, but I just cannot help but look at this kid and think 'total miracle'. It gives me the chills and I get all teary-eyed and introspective. But it's true. I don't want to take any of this for granted. Miller is a miracle in the flesh. Period. Who knows what kind of 'arm' he'll have or how fast he'll be able to run? And who cares? He's an amazing little man who's taught me more about life in the past 7 1/2 months than I've learned in 33 years. He's my little mountain mover.
Tuesday, December 4, 2007
7 month update
Holy Moly! An update! I didn't mean for this much time to pass. Life has a way of sneaking past you, especially when you're all wrapped up in your little tater tot.
Healthwise, Miller is doing doing great. We've been very careful, and I cringe whenever he sneezes. Still no teeth, but the teething behavior is persisting. Lots of drooling and biting, and occasionally some nighttime crankiness. We went to see the doc last week for his 7 month checkup and he had lost a little bit of weight. The doc says not to worry since he was on the chubby side, and that he's pretty much on target now. We go back this Friday for a sanity check. I'll get to weigh him again and the doc will give him the once over.
About a week ago Miller started eating rice cereal. This is how he looks every morning-
We finally closed on our house last week so we'll be moving soon. I can't wait to hang that Little Tikes swing in the tree we picked out for him. It's actually the perfect tree-climbing tree. And there are crooked bendy enchanted trees all throughout the front yard, perfect for Halloween spider webs, scarecrows, and Christmas lights. It's all very Two Cats in the Yard, even though our cats are dogs. Tuesday, October 23, 2007
The Great Pumpkin
Tomorrow we go back to see the doc for our official 6 month well check. I can't believe how quickly time passes, or how soon we forget. Just the other day I was looking back at some photos from when MP came home in July and it was so strange to see him so tiny, perpetually sleepy, hooked up to an apnea monitor and oxygen. Now he's all wonder and smiles. So expressive and always staring at our mouths. He's quite the communicator and I swear he's trying to repeat what we're saying. Especially if we're saying 'ooouuuuuaaahhh!'.
Last week we started our PT with Little Tesoros Therapy. They're so great! Anne is our PT and she's great with Miller. She's sweet and patient, and is giving me some great homework to help bring him up to speed. She says there are a few things that we need to work on but she's really impressed with his social skills ! Well that's probably hereditary. I spoke way too soon about the teething in the last post. He pretty much started the next day. The doc says it may come and go a couple of times before any teeth poke through. Poor little guy gets a bit cranky and bitey though so he's getting an occasional dropper full of Tylenol.
The pumpkin patch was a big outing for both Miller + momma. Normally Miller doesn't make it past the front yard or on a good day, the end of the street. The enclosed and crowded spaces are still a no-no for a bit longer. We have been so very lucky with his health these past 6 months and there's no reason to start taking chances now. We're following doctor's orders for those that think we may be a tad bit overprotective. That takes some sacrifice of course but it's short term in the grand scheme of things. Hopefully nobody thinks we left the country.
In other news-
Aunty Paula + Uncle Andy are having...a girl! In this family that's almost a miracle in itself with all this testosterone. Hooray for the girls team! I started boot camp yesterday so we'll see how that goes.
So far, all 2000 parts hurt. And I am limping. In December we are moving. Probably. We are known for changing our plans, but this time I think it's going to stick. And since DP wants to put a TV in every room (seriously), look for us to be hosting a Superbowl party this year. You may have to sit on lawn chairs but you'll be able to watch the game in the bathroom. A fair trade, Danny would say.
For those of you who remember us mentioning the other baby Miller, "Miracle Miller" DeLorenzo, he is still in his momma's cozy womb in week 31 and counting! Please continue to keep him in your prayers as well. One day we'll be posting photos of them playing together :). You can check on his progress by clicking HERE.
We miss and love you all, and know that we wouldn't be where we are without all of your prayers, so thank you.
Lots of love, (and now giggles) Stephanie, Danny & Miller Lee Peeps
Tuesday, October 9, 2007
24 week Update
Today after his exam Dr. Mirrop said he looks great! His head growth and length are exactly where he would expect them to be and his weight is still a little on the chunky side-but who cares? I love his fat tummy and I'm just glad it's not the other way around. We're on the cusp of another new phase-teething. We can see and feel his teeth coming in and it's only a matter of time before they start trying to push through. We also talked about ECI and their lack of interest in Miller. Dr. Mirrop put some things in perspective and I feel better after our conversation. In the end, we're being ignored because Miller's doing so well--and there are lots of little ones out there with not-so-good parents who need the support and intervention of ECI. He also referred us to a private place to take Miller, so we'll let you know how that goes.
Yesterday we had to visit the pulmonologist to get our first Synagis shot. It's not a vaccine. It's an injection of antibodies to help little ones like Miller avoid RSV during the season lasting from October until through March. He'll have to get this shot once a month until then. Things did not go well and I am not looking forward to next month's shot. That needle was way too big and I'm not sure Miller has forgiven me yet, or if I have forgiven myself. He turned purple, stopped breathing, threw up, eventually cried--all of which led to me crying too. It's essential though, so we will just have to tough it out together.
Developmentally, it seems like he's changing everyday. In fact, today he giggled for the first time! At first he did it in his sleep and startled himself. It was so stinkin cute and I just wish I had it on tape. A few hours later while I was making silly faces at him he did it again! Priceless. So of course I made those silly faces (and noises) over and over again in hopes of another giggle. After about 6 more giggles I got a distinctive poopy face so I gave up for the time being. He smiles all of the time now, and has started smiling at himself in the mirror and at crazy crosseyed strangers too. In an effort to get him to open his hands more we have been 'helping' him hold his bottle. Now he's beginning to reach for it himself.
Our next task is to find him a couple of preschools so we can get on their perpetual waiting lists. Why is it that he's a just a few months old and we're 'late'? He's not even going to go until he's 3 or 4! On all of the sites I've been to they list that you can apply while your baby is 'in utero'. Am I the only one who thinks that's totally weird?
Wednesday, September 26, 2007
Fat + Happy
Miller has been a happy little man these days, except of course when he's not. I'll spare you photos of 'Mean Miller' but here are a few smiley pants pics. Maybe he's happy because he's getting so chubby? Jolly. He weighs at least 12 lbs but we don't exactly how much though. Today he is 9 weeks gestationally, or 22 weeks and three days from his actual birthdate. He's been changing a lot lately and it's so fun to see him do new things! He smiling more of course, but he's also A LOT more opinionated. He's decided he doesn't like the carseat, but he likes the car. You figure it out. He still grabs hair and t-shirts, and anything else in his path. He 'stands' Sort of. When you hold him up he locks his fat little legs out and then buckles after a couple of seconds. He doesn't love tummy time, but he's getting plenty of it. He whips his head around so quickly now at the sounds of our voices that I'm afraid he's going to give himself whiplash. He loves to be entertained, but just when you figure out what entertains him, he gets bored! Short attention span theatre. One of his favorite things to do is fall asleep 'not' watching football on dad's chest.Since I have become a momma, I think I may have picked up a little bit a of fire...we won't call it a mean streak, more like 'no more mrs. nice momma'. Just like we were his advocates in the hospital , we are worse in the real world! Today I may have ruffled some feathers over at ECI. They were supposed to call us three weeks ago to check in on Miller. My phone ain't been ringin'. That call was also the time we would be scheduling another meeting and evaluation follow-up for two weeks later. So, that meeting should have been a week ago...follow? So last week I called and left a detailed message for our service coordinator. No call. Today I called her supervisor. The service coordinator called me back within a few minutes. Hmmm. Weird. Then she proceeded to tell me that she was just checking in and how are we doing? Ok lady, neither one of us is stupid, especially not me. We both know you just got your butt chewed, rightfully so. She offered to send me some literature so I could read up on where Miller should be. Um hello? We are definitely getting the brush off here. The rest of the details need not be mentioned, but she 's due here at 10:30 am. Don't mess with momma. Any momma.
In other news, we finally had to bite the bullet and give the boy some formula. 1-2 bottles/day. So far it seems like he's tolerating it well, but those toots are much stinkier and let's just not even talk about what is happening in those diapers. We go back to see the doc in about a week and a half I think. We'll get another weight then and a measurement [yay!]. Unfortunately, I think Miller's going to have to get some shots then too. At that point, he'll be about 6 months old and will get to go more places with momma.
At our next appt we are going to talk to Dr. Mirrop about referring us out to a private facility to monitor Miller's development and possibly get him in some type of OT/PT regimen. ECI is obviously not on the ball, probably due to the fact the Miller is doing so well. The problem with that is that often times certain delays or issues do not show up until 12 months, 18 months, or even 2 years+. So sitting around and waiting for him to not succeed is not an option for us. Every day I am reminded of the cold hard news delivered in the NICU and it's our job to do everything thing we can to shoot for the best possible outcome. My stomach just did a flip. I remember it like it was 5 minutes ago and that alone is a catalyst for us to reach for the stars. Sometimes miracles happen not just because we believe they can, but also because we help pave the way.
That about sums it up for now. Look for new photos in the next few days...
Friday, September 14, 2007
Another sigh of relief
The past couple of weeks have been an adjustment period. Miller's sleeping and eating patterns are [inevitably] changing. He's actually eating a bit less and sleeping a bit more...but he's on his own personal schedule so we're being flexible. Last weekend he had a little tummy issue which threw us for a loop. Now of course it seems so obvious. Thankfully we have the Internet to simultaneously drive us crazy and keep us sane.
We went to the pedi on Tuesday for a sanity check and to get a weight. 11 lbs, 5oz. Perfect. He's still gaining steadily, but not so rapidly that he's going to look like the Michelin Man by his 1st birthday. He will soon be leaving the preemie growth chart for good too. Dr. Mirrop recommended a head ultrasound to check on things so we had that yesterday.
The u/s went fine and we ended up meeting a doc there that had read some of Miller's ultrasounds while he was in the hospital. I'm not sure what to think of that. If you remember, in the hospital there were conflicting opinions on those ultrasounds and ultimately we ended up only communicating with Dr. George [neurosurgeon]. We haven't spoken with Dr. George's camp on this one yet, but Dr. Mirrop called last night to tell us that the u/s looks good. There is no evidence of any new trauma, and in fact it looks like things are really healing up well in there. He did mention that there is some evidence of loss of white matter [nothing new], but no way to tell how or even if that will have any adverse affect on Miller's development, etc. We can't predict the future, but if we're judging by the past and present, I'd say Miller is in an excellent place. Once upon a time, not long ago, in a land not far away, a pretty bleak prognosis was bestowed upon us. Since that time, we have experienced miracle after miracle with Miller and we intend to keep it that way.
So here's a mini update on what Miller's been up to. He has a couple of new tricks up his sleeve. One of them being grasping. He's started in on the hair. My hair, actually. He likes the underhairs, just behind your ears, and prefers the death grip. Surely I am not going to end up with bald spots? Right? He always has a handful of shirt or dad's chest hairs and holds on for dear life. Those teeny little fingernails are SHARP and they grow so darn quickly. He'll grab fingers and do pull ups and sit ups, especially if he's hungry. And his favorite new game is 'walk me around the house until you're dizzy so I can look at everything'...he LOVES this game. He's kicking a lot too, which makes him catapult quite suddenly into various directions and occasionally results in a headbutt. I am shocked that I have not yet suffered a fat lip. He's starting to make lots of faces too and is more expressive...






Wednesday, September 5, 2007
Eleven is Heaven
I talked to a lactation consultant the other day who gave me an absolute earful about how I'm setting Miller up for a life of obesity by feeding him when he's hungry. I cannot imagine this, really. Dr. Mirrop says this is advice to ignore, at least in Miller's case. It wasn't that long ago that he dipped below 2 pounds! So I say, Eleven is Heaven. Yesterday he weighed in at 11 lbs, 1oz to be exact and his fat little tummy is so cute. I think the camera really does add 10 lbs, because in person he's not quite as tubby as he looks in his little slide show.
We had a tiny scare yesterday but it's already in the past (whew). I found what I thought to be a dime-sized amount of blood in Miller's diaper. Turns out, it was Uric Acid Crystals. The doc we saw (Griggs, Mirrop was out) told us it was nothing to worry about but I researched it on the Internet anyway. The only thing I can figure out is that it may be due to the fact that he's getting some of the early milk I pumped when he was first born (been in the deep freeze for awhile). It's much more concentrated than the milk I am producing now. It was an isolated incident so I'm not going to lose any sleep over it.
This past weekend we ventured out for another overnight trip-this time to Johnson City. One night was enough and we were home safe early Sunday. It was nice, however short, to leave the house with Miller in tow and just go somewhere else. Another couple joined us, Kate & Clint, with their little sugar pie, Susie who is just 3 weeks Miller's senior. She taught Miller how to drool this weekend, because he's been doing it ever since. Sadly, we missed out on Elle's 1st Birthday party, our first party invite ever, but we just couldn't risk it with so many toddlers. We were honored to make the list and will definitely not miss #2!
One last thing, we have recently learned that Miller's going to have several new playmates next year. First up is Baby Smith, due in about 3 weeks! We just want to say congrats to you all and we can't wait! Since not everyone has shared their news yet, we won't do it here either. Just know that we pray for each and every one of your growing bellies every day.
Love to you all
Friday, August 24, 2007
Ouick Pedi Update
xo
Thursday, August 23, 2007
At last, a gauge
In my constant scouring of the Internet, books, and any other possible source (i.e. the mailman-yes, he had a preemie too!), I have learned some new things about preemies and their development. One of them being 'babywearing'. Babywearing (slings, wraps, etc) is wonderful for all babies, but especially for preemies and newborns. It fosters the bond between mother and child (fathers too), creates peaceful stimulation, promotes security, aids in breathing, promotes learning (via a state of quiet alertness while trucking around with mom), and can even encourage good eating habits, being so close to the source. Point is, babywearing does not promote blogging!
Something else that is encouraged (and totally discouraged by the hospital) is cosleeping. We are not exactly practicing cosleeping, but Miller only spends about 4-5 hours a day in his own bed. Our way of practicing cosleeping is allowing him to sleep on or very near us unless we are going to sleep.
I am quite sure there are many opinions out there about this and may not all align with ours, but unless those folks had a baby an entire trimester early, they are not really able to come from a perspective that we can relate to. Here's an example: On at least a weekly basis someone asks us how old Miller is. They totally expect to hear something like '3 weeks' or '5 weeks'. However, this is what they do hear: "ummm, well, technically he's 17 weeks, 3 days. However, he his due date was 4 weeks ago today, so he's really only 1 month old. Except, he's kind of doing some things that a 2 month old might do, but not really. He'll need time to catch up--you can't speed those 13 weeks he lost in the womb up just because he decided to come out early..." and on and on and on. Yes, I know this is way too much information but I don't really know how to sum it up, and how to avoid the 'you poor dear' face. And if I say four weeks (or whatever the number is at the time) I immediately get "wow! you look great for just having a baby" and so we have the conversation anyway. It's a 'walk a mile in your shoes' kind of thing.
Another important thing I have learned (and inherently knew, but now I have it in print) is that letting him 'cry it out' is not what's best for him. It can manifest itself in insecurity, breakdown in parent-child bond, and over all stress him out-thwarting developmental progress. He needs to know that if he cries (his only form of communication at this point) I will respond to his needs. And I do.
All of that aside, we have an update on his progress. We had our ECI (Early Childhood Intervention) evaluation today with our service coordinator and an OT, and we are incredibly encouraged by their findings. As a former 26 and a half weeker with a Grade IV IVH , Miller is exceeding all expections...a constant reminder of what a true miracle he already is. At exactly one month old corrected/gestational age, and four months from his birthdate Miller is displaying the actions and skills of a baby anywhere from newborn to 3 months old. Here are a few of the notes they made and things we discussed. Some things are redundant because they are related:
VISION:Watches ceiling fan, mobile, lights. Gazes at faces. Beginning to make some eye contact.
HEARING:Passed newborn hearing screening, turns to voices, startles at loud sounds.
NUTRITION:Feeding well and gaining weight (update on weight tomorrow after pedi appt, but somewhere in the neighborhood of 10 lbs). Drinks from bottle well (not so good at the breastfeeding, but he's still on exclusive breastmilk).
FINE MOTOR: Opening & relaxing hands. Tracking faces, objects slowly. Moving arms well, and in a random manor. Appears to have good range of motion . Lifts and moves his head.
GROSS MOTOR:Kicking and moving arms quite a bit. Will push up and move head to look around when on tummy. At this time, tone appears to be within typical range. (This is SO HUGE since kids w/ CP typically have high tone or sometimes low tone...no guarantees about the future, but this is great news right now).
COGNITIVE: Listening to voices, reacting, watching mobile when in crib
EXPRESSIVE COMMUNICATION: Cries when hungry or uncomfortable. Beginning to grunt and whine.
RECEPTIVE COMMUNICATION: Watching peoples' mouths and eyes, turns towards the sound of voices of parents.
SOCIAL/EMOTIONAL SKILLS: Very alert and aware of surroundings, gazing at people and watching their mouths as they speak.
We have a lot to be grateful for and we are very careful not to forget this. We are getting a little bit more sleep and moving around more. Little by little we are becoming human again. We made a trip to Kerrville a couple of weeks ago and Dad got to fish with his little bro's. Mom had a pedicure (praise the Lord) just yesterday and is looking forward to a massage in the near future. The dogs are doing great too, but they probably need a tiny bit more exercise. Miller is eating and gaining weight like a champ, and really just acting like a baby. Life is good. I PROMISE to update tomorrow or this weekend on our pedi appt tomorrow. Look for new photos this weekend too.
Love to you all-
The Peeps'
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