Bryce Alexander Moline

Cerclage Tomorrow & Other Exciting News

2012-02-13T11:04:00.003-06:00

Well, tomorrow is the big day finally. I went to Temple to see a perinatologist at the Scott & White hospital on Friday. And despite the fact that the original part of the hospital I visited is right out of the Twilight Zone and full of Wal-Mart people, it was a good visit.

The peri. I saw was extensively experienced in high risk pregnancies, very forthcoming and not ~~bad on the eyes~~ in disagreement with anything the previous peri. here in Austin had told me.

He did an ultrasound to check my cervical length and found it to be measuring much larger than the last two, more than 3 cm where as neither of the last were over 2.5 cm. This news pretty much immediately took a lot of stress and anxiety away.

He also gave me some numbers I'll be hanging onto pretty tightly: cerclages have been shown to reduce the risk of preterm labor by about a third, additionally progesterone therapy (the weekly shots I start next week) have been shown to have the same reduction in risk. I verified that that meant a total of 2/3 risk reduction with both treatments. It's not a guarantee, or even really good odds, but it's better than half and better than I expected. It's also much better than Bryce's odds of surviving were when he was born and look at him now! So, I'll gladly take 2/3!

I also asked him during the ultrasound if he had any guesses on the baby's sex. He was fairly certain it looks like a boy though 15 weeks is pretty early to tell. Here is the picture he gave me for Caleb, I'll let you try to figure it out and judge for yourself:

Caleb and I were both kind of hoping for a girl, since we already have a boy, but if two parents ever just wanted a healthy baby it's these two.

The earliest they could get me on the surgery schedule is tomorrow and the peri. I saw Friday won't be on but he said that the lady peri. who will do the surgery is very good and has LOTS of experience. Yay!

She also has a full morning of c-sections already scheduled so we have to arrive (in Temple) by 9 a.m. and I can't eat after midnight but it may be afternoon before they are able to work me into her surgical schedule. I'm pretty excited that Caleb's new boss is letting him come with me, he hasn't had a chance to see or hear the baby at all yet and will probably get to tomorrow. Happy Valentine's Day to us!

And before I leave you all with that bit of good news all around I have just one more exciting bit to share. Bryce has been practicing walking with his posterior walker for a while now and seems to be really getting it! His PT (physical therapist) is nearly as excited as I am, which is to say very, very, very!!!

Here is a short video we took on Saturday while practicing. He made it from the back door to the front door, around through the kitchen and back to the living room on Friday for his PT and my dad. Today he did the same but with a loop around the dining table - baby steps, baby!

It's funny, I was reviewing my YouTube upload history and realized that a year ago we were trying to get Bryce to stop rolling and start crawling, 7 months ago he started pulling up and today he's starting to walk. His progress in the last year really astounds me. We've worked hard for a long time to get here and I couldn't be a prouder momma!!

I'll try to update after we get home tomorrow to let everyone know how to surgery went and what's next on the agenda. Until then, thanks as always for checking in on our little family!

Play Date Fun

2012-02-09T08:36:00.000-06:00

I was perusing some friend's blogs whilst trying my best to take it easy yesterday when I ran across a picture of Bryce! What a nice surprise that was.

I feel like poor Bryce hasn't been the main subject here at Bryce Moline lately - which is a bit of a misnomer. Not to mention, I felt that the blog generally needed a bit of a lightening up.

So I figured why not follow Mackenzie's lead. My friend, fellow special needs mom and head honcho over at pforpeanuts has the cutest blog and even cuter twins: Ellisa and Hudson, who happen to have equally adorable names.

Anywhose...I've been trying to get Bryce around some more little ones whenever I can. He is quickly outgrowing the babies in the infant room at his day care and it's just good for us both.

Especially when we can spend some time with a couple of mommas who get the special needs mom thing. You knew it was "a thing", didn't ya? Only kidding of course, I just mean that there is an instant understanding with other moms who get it. "It" being the all at once absolute joy and overwhelming reality of caring for a special needs kiddo.

But we, and by we I mean I, have been grossly unsuccesful in this endeavor. Bryce's therapy and doctor schedule coupled with work and daily chores makes fitting anything into our schedule a challenge. But then trying to coordinate our hectic schedule with one or more other hectic schedules means our play dates are sporadic at best.

I am working on it though and looking forward to a lighter load in the summer. Which in Texas we know is always looming ever so hotly right over the horizon...but I digress.

We were able to host a play date at our house a while back and Mackenzie was saavy enough to snap a picture (thanks, Kenzie!) when I wasn't. And what a treat when weeks later, after having almost completely forgotten about it, I happen upon her post Peanuts Play Dates and Bryce's face!

Just a little nudge from the powers that be to keep trying to make those play dates work - for us both.

No Surgery Today

2012-02-08T09:39:00.000-06:00

Thank you to everyone who reached out to me over the last few days with words of encouragement, support and love. You can't possibly know how much that means to me.

And for those who don't know already, I'm sorry for the late update but I am not having my cerclage placed this morning.

A nurse practitioner, but more importantly, dear friend of ours, called me Monday morning and gave me some insight into the risks of having the cerclage placed by an inexperienced OB. I, unfortunately, had no clue that there was a likelihood that the cerclage could be ineffective if placed improperly. I had been led to believe by the OB I saw last week that a cerclage is a cerclage and as long as no complications occurred during the surgery it would be all that it could be. Kind of like the Army.

But my friend has some personal experience with ineffective cerclages placed in a friend's cervix, resulting in the tragic loss of one baby in the second trimester and, bless her heart, even another in the third. As you can imagine, that little bit of information just put me over the edge.

I called Caleb immediately and explained my conversation with our friend. He was quick to say he was happy I was going to seek alternatives because he had a "bad feeling" about the other OB. Poor guy knows how stressed out I am and probably weighed the added stress of insisting I find another option against his bad feeling and decided it better to keep quiet. Sorry, hon.

So the search for an alternative began. And it was a full day of phone calls on Monday that finally resulted in my appointment yesterday morning with the intake nurse at Scott & White's Round Rock clinic. I wasn't expecting much from them, considering my other experience with S/W so far, and was really concerned about further delaying the procedure that was already 5 days and counting behind the "ideal placement for optimum effectiveness" as per the perinatologist I'd seen at North Austin Maternal Fetal Medicine. But I felt I had little other option and hadn't actually canceled my procedure or pre-op yet.

The nurse blew me away. Maybe it was because I told her Bryce's birth story and then showed her two pictures of him - one of the night he was born and one of him eating a push pop last week with the sweetest grin he could possibly muster for a mother constantly taking pictures of him. Who could resist this sweet face?

And remember this? {Seems like just yesterday and a million years ago all at once.}

She immediately left the office and asked every nurse and OB available in the office what the best thing to do was. She genuinely cared and clearly understood my concern for the situation. I know that there are distinct limitations to what people can do, especially when it comes to doctors and specialists and surgery scheduling. But I just wanted someone to try and she did. Thank you, Laurie!

And so did the OB's in the office - they told her they wouldn't touch my cervix with ... I don't know, something you don't touch a cervix with....until that cerclage was safely placed by a perinatologist. I knew they didn't have one here and I had come to terms with the fact that I would likely be driving to Temple. But the peri. they suggested is, of course, on vacation this entire week. Laurie promised me she would call his nurse, send my records and plead my case first thing this morning when she was scheduled to be back, in an effort to get me on his surgery schedule Monday.

And so I left the office equally uneasy and relieved. And not one hour later Laurie called to say that she found another peri. office at the S/W clinic in Temple who could get me in on Friday. So to Temple I go on Friday.

I'm still waiting to hear back if I need to have someone drive me Friday because we could be in surgery or if I can go alone. Since my appointment isn't until 1:20 p.m. I'm assuming the latter but my gut feeling about this whole waiting game is getting increasingly bad.

That could be a result of my intense mom desire to do everything possible for this baby, to make no mistake and have no regrets. Or it could be that same sixth sense that regularly woke me in the night the weeks and months after Bryce was born and was fighting so hard to survive.

I've been trying with all my might to stop weighing pros and cons, stop second guessing my decision to cancel the cerclage today and stop wondering how I'll deal with it if it turns out that waiting was the wrong decision. I went to work yesterday after the appointment, I got up early and cleaned the kitchen today, I am going to tackle laundry and meet Bryce's new occupational therapist and do my best to distract my whirling mind from the omnipresent questioning that is plaguing it.

Freaking Out

2012-02-03T11:42:00.000-06:00

I started this post on Wednesday, just after my appointment with the new OB. Here is where I was emotionally at that point:

For the most part, I try to save my freak outs for the privacy of our home and the likes of my poor husband. But today is just not one of those days.

Sorry.

I just left the new OB, whom I had to pick randomly from a list of 12 on Scott & White's website. She was nice enough - but she said that SW won't pay for my perinatologist to do the cerclage because she can. She's done 2 before so she'll admittedly be nervous but I shouldn't worry too much. Ha.

She did another ultrasound and said that my cervix is definitely shortening already so we need to get this done ASAP but it doesn't have to be today. She also had to tell me that putting holes in my cervix means there is a chance that my water could break and we could lose the baby.

She said a lot of other stuff - like we'll do the surgery at St. David's in Georgetown, I'll be awake but numb from the waist down and draped like a c-section so I can't see anything, and I should expect to be able to leave a couple of hours after. Mostly I heard the sounds of the Peanut's teachers, "wah wha wha...."

I've been trying to get back to finish the post, I know a lot of you are wondering what is going on but I've also been trying to wrap my head around everything.

I think I'm mostly there now though still freaking out about the fact that my cervix is shortening already, at only 14 weeks, about the risks with the cerclage and the chances of getting somewhere near full term with this baby.

Not to mention, worried at the news from the OB that if I go into labor before 36 weeks and they can't stop the delivery that I'll have the baby at the Round Rock facility - NO NICU THERE - and they'll transfer the baby to TEMPLE. But if they can stop the labor then they'll transfer us both to Temple. I'm not sure which of those outcomes scares me more - having yet another baby sent to a NICU I've never seen without me or leaving Caleb and Bryce at home while I go to Temple by myself.

I have to just stop there because I'll get my anxiety levels all out of control if I let myself go down that road even a couple of steps.

It's funny though, not exactly ha ha funny but odd to think, at 14 weeks with Bryce we were talking names, planning his nursery and looking forward to finding out if he was a he or a she.

We were blissfully naive.

But I can't help but wonder if I'm already showing signs, maybe I was with him too. Maybe if we'd gone to a traditional OB instead of a birthing center they would have done more ultrasounds and caught the changes in my cervix. Maybe we could have prevented his preterm birth and therefore all of the challenges he faces on a daily basis would be nonexistent. Maybe.

Please don't bother commenting about how I shouldn't go there, about how questioning the past and blaming myself are neither going to change anything nor help my own mental state. I know this. But I also know that if you were me, you'd do the same thing. I know.

All questioning and blaming aside, I'm resolving to focus on resting, getting over this sinus infection before surgery day and distracting myself to the utmost until pre-op on Tuesday afternoon.

Wish me luck, ya'll - I'm gonna need it.

We're Officially Effective

2012-01-30T15:47:00.000-06:00

As of late, I feel anything but effective. Bryce, and thanks to Bryce, I too have been sick twice in only three weeks. Getting normal, every day tasks done is a challenge but getting insurance and related issues dealt with is a whole other kind of challenge.

BUT, as of today we finally have maternity insurance. It's nothing great (aka HMO) but it's so much better than nothing! I had to pick a new OB from the plan and schedule an appointment so that they can try to submit an authorization for coverage of the perinatologist here in Austin. The earliest they could get me in is Wed. morning and hopefully they'll understand the situation and work with us to make that happen. If all goes smoothly we may be in the hospital before the end of the week getting a cerclage put in.

If not, well - I just don't know. As my dad says, "We'll burn that bridge when we get to it."

Thanks everyone for keeping up with us!

p/s We're also officially into the second trimester - 13 weeks, 3 days today! YAY!

BOTW: 12 weeks, 4 days

2012-01-24T09:46:00.001-06:00

Went back to the perinatologist this morning to finish up the nuchal translucency screen. She said everything looks good right now, with an extra emphasis on the "right now."

I'll take that.

Now we're just counting down the days until our effective date with Scott & White so we can start the appeal process to get preauthorization for the cerclage. Once that's in place, God willing, we'll schedule the procedure and likely get in immediately there after. Dr. DeStefano said they'll schedule it like an emergency so we should be able to get in within 24 hours.

And so the nervous waiting continues...

On the Lighter Side

2012-01-23T18:36:00.001-06:00

Our lives may be a stressful, tangled web of insurance, therapy and doctors but fear not - we still know how to have a little fun.

If nothing else, our challenging life since Bryce's birth has taught me how to relish in the delights of every day life. Today that delight was spending a wonderfully nice afternoon with the sweetest, funniest, most handsomest boy around. {don't ya just love that most excellent display of grammar!?}

Here he is doing his best to feed himself his afternoon snack - yogurt:

Finally...

2012-01-20T14:45:00.004-06:00

I know I promised an update a week ago today, there's just been a lot to think about. I guess I wasn't (and still am not) sure how to write this post.

Things with Bryce have - I'm just gonna say it - always been a struggle. I guess I'm accustomed to that. But lately we seem to have hit some sort of tipping point where it feels like everything is just slowly and surely slipping out of my grasp. He seems to be getting older faster than is possible and I still don't feel good about my decision to continue to push with all of the therapy ECI will provide until he turns 3 and then essentially give him the summer off. I may be coming to terms with it but I don't have to be happy about or give up on other options.

Which is why I've been working myself crazy looking into other programs that might fill this gap. I've almost finished the lengthy process for the Children with Special Health Care Needs program application but am still waiting on one last document from the state to arrive before I can mail it off. The hard part is that I know it's a long shot, I know there is a waiting list and we have to reapply every 6 months or he gets booted to the back. But I'm desperate and my next resort will be weekly bake sales or something. Hmmm, I wonder if that would work?

In more positive news, Bryce had his hearing screen at Dell this morning and though he was awfully hard to read the audiologist felt confident that his hearing isn't what is holding his language back. Consider that box checked.

And after my dad turned me on to this new study finding that babies learn a great deal about how to talk from watching your mouth move, I made an appointment with a low vision specialist for a few weeks from now. I'm hoping that maybe she can give me a better idea of what he sees, what he doesn't and how to help. Bryce's vision instructor does this to a degree but she had mentioned some time ago that this report would help her help him better as well. So I'll consider that box unchecked but in progress.

And finally, on to Baby on the Way (BOTW). Today marks the half way point with BOTW to where I was the day Bryce was born. It's hard not to have anxiety about that. I'm just a hopin' and a prayin' that I'm closer to about a third of the way with this one.

I go back to the perinatologist (Maternal Fetal Medicine doctor) on Tuesday to finish up the nuchal translucency screening. BOTW wasn't quite big enough last week but supposedly doubled in size this week so should be plenty big enough by Tuesday. We'll also be scheduling a cerclage that day.

I can't say I'm excited about the cerclage. At first it looked like a given, then my OB didn't seem too concerned but the peri. is adamant that it be done by 14 weeks. Oy vey.

In case you're not up to speed - and for your sake I sincerely hope you aren't - a cerclage is an in-hospital day procedure where they put a stitch in your cervix to help prevent preterm labor. It's mostly used in cases of incompetent cervix (I deplore that term but don't have another and anyway that's fodder for a whole other post some day). It carries some intrinsic risks since it is an invasive procedure. But this doctor has a lot of experience doing them and as long as the procedure goes well it will reduce my risk of preterm labor significantly. The cerclage is supposed to be removed before labor begins and from what I understand, if it isn't not only will it hurt like hell but it'll mean a c-section. Just another thing to freak out about as far as I'm concerned, but I digress.

So in addition to the cerclage at 14 weeks Caleb will have to begin giving me the 17P (17 alpha-hydroxyprogesterone caproate) shots - in the rear, weekly for the remainder of the pregnancy - which will further reduce my risk.

And they'll check my cervix like a teenager checks Facebook. If something pops up it will be taken seriously and acted on accordingly.

Hopefully, all of these measures, coupled with my own unfortunate first hand knowledge of preterm labor, will keep us safely in the clear to at least 32 or so weeks. Which would be not ideal but so, so, so, so, so much better than 24!

And so that pretty much brings us up to date. Minus all of the boring details about how we don't currently have any actual maternity coverage and how paying the premium on the plan that will *hopefully* provide it beginning in Feb. is going to make us bankrupt, anyway.

My plan for now is to just going to keep on keepin' on. Because whatever has been thrown at us to this point we've somehow managed. If we have to live in a box but can provide what these babies need then so be it.

xoxo,

Fun with Numbers

2012-01-04T16:57:00.003-06:00

As much as I do love sarcasm, I wish today's title were less tongue in cheek.

After spending the better part of an hour on the phone just now, calling one number to get a "This number cannot be connected as dialed message," then calling another number to get another number where they gave me...you guessed it...yet another freakin' number! After several calls I finally spoke to an actual person, a nice one at that - I'm so lucky!

She was pleased to inform me that Bryce has been on the Medically Dependant Children's Program's waiting list since Sept. 18, 2009 and this August will be considered to have been on the list for 3 years. At this I allowed myself to get a teensy bit hopeful, maybe, just maybe, he was getting close. Then she burst my tiny bubble by informing me that of the 40,000 children on said list Bryce is currently number 24,281.

I can't help but ask the obvious here. What is the point of a waiting list for a children's program if it's so long that they're barely children anymore by the time they reach the top? Errggh.

I swallowed my fury and politely asked if there is anything we could do to get moved up on the list. She .... wait for it ... yep, you guessed it, didn't you? She gave me another number. Okay, now we all just have to get a good laugh out of this because if Bryce's life thus far has taught me nothing, it has taught me that a good laugh, no matter the circumstance, is almost as good as drugs or alcohol. And since Baby On The Way (as I'm now affectionately referring to the bean in my belly) certainly doesn't need to start such experimentation this early on, a laugh will just have to suffice.

So, long story too long, I called the last phone number, where I applied for Personal Care Services to get someone to take an interest in helping me help Bryce get the services he needs. But not before being given one last number, a ticket number for my call...oh, and the number to call back in TWO weeks if someone hasn't called me yet.

Wish us luck!

What to do, what to do?

2012-01-02T07:46:00.005-06:00

Why is it that anytime you're supposed to relax and take it easy life makes it impossible to do so?

Turns out that Medicaid will not be paying for Bryce's in clinic therapy any more than they will pay for his in home therapy - which is not at all. I am so disappointed because I thought we'd finally figured out a way to get him the therapy he needs over the summer between when he turns 3 and when school starts in the fall.

I have to be careful though because Medicaid does help pay for doctor's visits and Botox treatments when our high deductible primary insurance falls short, which is often.

I got in touch with said insurance company last week as Bryce's speech therapist said that they may cover more than the current limit of 12 therapy visits per year based on his neurological diagnosis. After essentially copying the policy copy back to me they said that in very, very rare circumstances they would cover up to $25 of 10 additional therapy visits per year, after his $5000 deductible has been met. Well, gee - thanks so much! At $110 a visit they're basically agreeing to a very expensive discount program.

So we're back to square one. Except that it's January 2nd and Bryce just completed his first therapy visit of the year, leaving 11 covered visits for 2012. I talked in depth with his physical therapist this morning during her visit and feel like we have a better handle on our limited options.

We could choose to decrease PT from 4x a month to just once, keep ECI Speech at weekly since insurance doesn't pay for it anyway and stop private Speech, Developmental Specialist, Dietician and Occupational Therapy all together. This would mean that we would save enough visits so that he could still be followed by a PT once per month for all of 2012. A far cry from the therapy schedule he's had for the 2 years since he's been home from the hospital. (How is it even possible for time to move so quickly that Bryce has been home 2 years??!!)

Or we could stop everything right now, except ECI speech, and save all 12 visits for a semi-intensive summer therapy regimen in a clinic setting somewhere. But this would still be limited to PT and leave OT out all together.

OR we could just continue to use all of the therapy we have available from ECI: PT weekly, Speech weekly, OT and Developmental Specialist each twice monthly and Dietician every other month, until he turns 3 in June. This would mean that we wouldn't have any covered therapy for the remaining 6 months of the year but as his PT pointed out, the summer will likely go by fast and we may need a therapy break by then anyway.

And with the new baby on the way we really have no business making concrete intensive therapy plans for six months from now. For all we know, I could be on bed rest or - God forbid - we could be back in the NICU. At the very least, we know that I'll be making weekly visits to the OB for checks beginning at week 13.

He'll get therapy from school beginning in the Fall and through the end of the year. We're sure it's not going to be everything he could ideally use but it's certainly better than nothing. And that gives us 6 months to try our hardest to get him walking (with a walker, independent walking is likely much, much further out for our Bryce) before he goes to school. That would make me, his PT and I'm sure many others feel just a little better about our baby going to school.

We still have a lot of talking and deciding to do. At the end of the day the last thing any parent wants is to feel like they did anything less than the most they could muster for any of their children. I want nothing more than to continue to give my everything to Bryce but somehow I have to save some of my fight for the baby on the way. And maybe a little for work, Caleb and me too.

Your thoughts, input, opinions, experience and comments - as always - are not just welcome, but encouraged and appreciated!

Good News!!!!!

2011-12-21T20:13:00.002-06:00

While I was at the doctor yesterday Bryce's neurologist called to let me know that the results of his EEG were normal. I felt like that would be the case all along but it sure is nice to have the definitive results.

And in other good news, the reason I was at the doctor yesterday was for a sonogram. We're excited to announce that I'm about 8 weeks pregnant! There are lots of hurdles to jump through, decisions to make and changes to follow but the official due date is currently August 4 - which just so happens to be our 11th wedding anniversary. Wouldn't it be a nice anniversary present to have a full term, healthy baby sister or brother for Bryce.

I'll be back soon with more details about the coming months. I'm just too exhausted (ohh, pregnancy!) at this late hour of 8:25 p.m.

LISD Transition, EEG, etc.

2011-12-15T17:22:00.001-06:00

Yesterday was one long day! We started the day at the Leander ISD transition meeting, which lasted a solid two hours. It went about as expected, unfortunately. I was still holding on to a little bit of hope that they would see Bryce, read his history and realize that he needs summer services regardless of their asinine bureaucratic nonsense. No such luck.

Mostly she said that even if we could qualify him for services what he received would be pretty much worthless anyway. And the only way to qualify him would be to stop all therapy for six months and then assess him to show that he's regressed. WHO IN THEIR RIGHT MIND WOULD DO THAT TO THEIR CHILD IN ORDER TO RECEIVE 2-3 MONTHS OF SERVICES?? It's completely absurd and infuriating.

As it turns out we may have found a way to get him private therapy through Medicaid, which if it works out (fingers crossed) for all therapy disciplines would be an absolute saving grace! It would mean that I can get Bryce all of the therapy that he truly needs for the entire summer without having to have a meltdown at Leander's district offices.

You'd think this would make me not care so much about this ridiculous system to which we dutifully paid taxes to for 7 full years before Bryce was born. Nope. I can't get past how the whole system seems to be set up so that most people don't get the services they need and are entitled to. Unless you make a boatload of money, happen to be a lawyer or both you can pretty much guarantee you're not getting a fair shake.

So that's my rant for today. Sorry guys!

After just enough time for a nap and lunch I took Bryce for his EEG, which ended up being another two hour ordeal. He was so good though. Here are some pictures of him getting his probes attached:

Don't think for a second that I don't count my blessings EVERY SINGLE DAY! I may have to put up with a lot of crap when fighting for Bryce but good gosh, he's {SO} cute & sweet AND he smiles through it all. I don't know what I'd do if he wasn't so easy going!

That doesn't mean that he sat still for the 25 minute test. Here's a fun game to play on a rainy day. Get a two year old, stick a bunch of cords to their head and then see if you can get them to be still for 25 minutes and not pull any of them off. It was a challenge but we got it done!

I kept trying to watch the screen and see if I could see anything:

I saw a lot of things that looked really scary to someone who knows nothing (ME) but finally gave up on trying to make any real sense of it. We don't have any results yet but should this week since they wanted to get them before Bryce's botox on Monday morning. I'll be sure to let you all know as soon as I do.

After the EEG, Poppa picked up Bryce to deliver cookies to some of our North Austin clients. Which gave me a chance to finally stop in and visit a dear preemie mom friend of mine whose sweet little Harper had a hemispherectomy last week. Harper looked amazing - all pink and alert and .... so far seizure free! If you can, please take a second to include their sweet family in your prayers and/or blog reading activities: Twingate.

Thanks, as always, for keeping up with the Molines.

Enough with the Assesments Already

2011-12-13T18:43:00.000-06:00

We're running on assessment overload in the Moline abode these days. Bryce has endured three in the last 10 days and though he smiles and charms, I smile and grimmace.

I've just about had enough of people telling me how far behind he is. I know it's their job and I know it's for a greater purpose (setting goals, developing therapy plans, etc, etc) but enough is enough already.

Believe it or not, I didn't come here today to rant, rave or complain though. I came to update. I thought our sweet and supportive family and friends would want to know what's in the pipes.

Tomorrow morning we begin our endeavor to get Bryce into Leander I.S.D.'s Early Learning Environment. I think I've explained before that this is a school district program for children with disabilites. It should provide a classroom environment of children who are 50% disabled and 50% normally developing for up to 4 hours, 5 days a week. The idea is that the kids get their therapy there as well as an opportunity to learn from and be motivated by the other 50%.

So tomorrow we'll start what I imagine to be a fight. While I'm (too?) sure that Bryce will qualify for the program and find it likely that he'll qualify for their "full time" schedule, I'm anticipating a show down over what services he'll receive this coming summer. Since he'll turn 3 after the end of the school year and ECI will not be allowed to provide therapy services after his 3rd birthday.

I'll attend the information meeting tomorrow. Likely schedule his assesment for early 2012 and prepare myself for battle. Wish me luck because from what I understand, I'll need it.

Other than stressing about Bryce going two to three months without therapy, I'm stressing about an EEG tomorrow. I called Bryce's neuro last week after Dr. Fasci, the developmental pedi who specializes in neurology, saw him do his little spacing out number the previous Friday and suggested we let his neurologist know. They called back and said that they wanted to do an EEG before his next scheduled botox injections - which just so happen to be bright and early on Monday morn.

I'm feeling confident that the EEG will show no signs of seizure and that we're all just erring on the side of caution. But stressing, none the less.

So we'll do both tomorrow and hope that Botox goes as scheduled on Monday because we're seeing increasing signs of the last dose wearing off. Bryce is a little wobblier when sitting due to the increasing tightness in his legs and hips. And his right hand is staying more and more fisted, more of the time. It's so hard to see how frustrating this is for him. It was one thing to watch him struggle with "righty" before he ever had real use of it but a whole other thing now that he's had a couple of months of decent use.

I'll do my best to keep you all posted as we receive the results and as I know more about what to expect from the school district.

Until next time, thanks for checking in!

Developmental Assesment Results

2011-12-03T21:42:00.002-06:00

Bryce and I had a long (as in 2 entire hours) visit with Dr. Fasci and another doctor (name?) yesterday morning. It was a full blown assessment this time and completed exhausted the poor guy but I'm glad to have the information.

She had a tool kit of toys for testing different skills: crayons for coloring on paper (nope), puzzles for putting pieces back in (lacks the fine motor skills of a real pincer grasp and quite simply doesn't care), cups for stacking (nuha), cups for putting into each other (no), like and dislike objects for matching (almost tricked us on that one, but no). That's just a samplings of what we call the, "Not Yet" category.

On the other side, in the "Heck Yes" category, Bryce did put a simple square piece into a square hole in a puzzle-like board, he takes things out and puts them back in, he knows where several body parts are, where the door and the chair were (and therefore what they are), how to "hide" (hilarious!), clap and turn the pages of a book.

Overall, Dr. Fasci ascertained that Bryce's receptive language (what he understands) is excellent - about 18 months - while his expressive language is severely delayed (obviously) - about 8-10 months. Bryce's motor skills, major body movements, test on a 10-12 month level while his fine motor skills, i.e. pincer grasp, zippers, buttons, etc, test on an 8 -10 month level. The good news is that most of Bryce's skills are close to the same level which means that he's progressing in the same way any child does, just more slowly.

Of course, we're concerned about how far ahead his receptive language is because the last thing we want is for him to get really frustrated and quit trying to speak and sign. We're just planning to continue with the twice weekly speech therapy and keep giving him lots of different opportunities and means of communicating what he wants and needs.

Our other main concern is Bryce's fine motor skills, which Dr. Fasci wants us to work on with weekly Occupational Therapy. Apparently she either assumes our insurance covers unlimited therapy visits, that we have nothing else to do or both. But seriously, as much as I want to do everything for Bryce and make sure he has all of the opportunity he needs to "catch up" - there is simply only so much we can do.

And even though, after much torment and guilt, I eventually always come back to this conclusion it just doesn't sit well with me. So we'll forge ahead, trying to find more ways to make what we have and what we can offer Bryce enough.

Oh, and one last bit of news. It's probably nothing (I sure hope it's nothing!) but Bryce has been "zoning out" sometimes once a day, sometimes more but most days of the week. Dr. Fasci saw him do it during the assesment yesterday and said that we need to talk to his neurologist about it. Apparently this could be seizure activity or early signs of seizure activity and if it is knowing sooner would be better than later. I'm just going to need to believe it isn't right now, while going through the necessary steps to have it checked out, because I just can't emotionally deal with a thing like that until I absolutely have to... keep us in your thoughts. And thanks for stopping by!

December Already

2011-12-01T09:12:00.001-06:00

This year has seemed to fly by even quicker than the last. I can't believe it's already December and time for Christmas preparations. It seems like just yesterday we were visiting Dr. Fasci for Bryce's first developmental assessment. But alas that was September and our 3 month follow up is this Friday.

I'm looking forward to bragging about how Bryce now can put a ball into a ball drop toy and will actually - occasionally - hand you an object. It's the little things in our house that get us giddy with pride!

The increased speech therapy has afforded us some new perspective and though "up" is still Bryce's only official word, he is making an obvious effort to sign and communicate more. I only hope he doesn't get too frustrated by how difficult it is before his communication improves.

And to further prove the lightning fast passing of time, in just two short weeks I'll be celebrating my 32nd birthday with a visit to Dell for Bryce's next round of Botox injections.

Although I'm so excited about the gross motor skills improvement we've seen since the last injections three months ago and hopeful for fine motor improvement with the higher dose to his right hand planned for this round - I still get that sick feeling in the pit of my stomach when a visit to Dell's surgery center is imminent. Of course, it doesn't help that i still have awful flashbacks of holding him as they put him under last time and this time it'll just be me with Bryce. Oh the things a mother does.

Annual Update

2011-11-09T23:32:00.002-06:00

Ok, okay so I update just more regularly than annually - just more.

So often, in fact, that I hardly know where to begin. Let's start with we saw Dr. Fasci, the nuero. pediatric developmental specialist, who we loved. She spent a great deal of time with Bryce. She made some very real assessments of his ability and was such an amazing enabler to my Bryce-advocacy that I almost forgot she wasn't his mom.

We learned that the school year doesn't just "end" for summer - that there is such thing as the extended school year. And that Bryce should qualify though the laws are sketchy and the motives for the staff to be in school over summer even more so. Wouldn't be a big deal if his current therapies weren't state mandated to end the first business day after Bryce's 3rd birthday. Which just so happens to be in the "summer off" of the school year. So there is a good chance that we'll get Bryce into the extended school year early learning environment, where he will get the majority of his therapies. I plan to volunteer for as much in the program as possible so as to be a bystander of his curriculum. Shortly after dealing with this hurdle, I'm sure we'll have another to leap as he graduates (or the district wants him to) to kindergarten.

Back to present day reality; Dr. Fasci, after repeated prodding, finally conceded that the bare minimum therapy for Bryce would be each discipline once weekly. He gets much more than that now but self pay is somewhere in the range of $100/visit. And Dr. Fasci believes that his current schedule of weekly PT, bi-weekly OT and Early Intervention with bi-monthly Nutrition is getting the job done. Her main concern was Bryce's speech/language skills. Bryce WAS getting speech therapy bi-monthly but her recommendation was twice per week sessions.

All this therapy is trying and time consuming but we forge ahead and hope for the best.

Never mind ECI (the state therapy provider) not following that "twice per week model" or school of thought they have increased speech therapy to weekly. That's twice as much speech therapy and we're already starting to see results.

Of course, we may or may not be supplementing with private speech therapy. That's a subject for a whole other post, perhaps a password protected post of the privileged nature.

Whatever the case may be, Bryce said "up" to me more times today than I can count on both hands. And that is huge for our little 29 month old , former 24 weeker, preemie.

That's all for tonight, folks. I'll try to get back to the update ASAP.

xoxo!

It's Almost Supposed To Be Birthday Time Again

2011-09-22T07:21:00.002-05:00

Time sure does fly. People always say that but it never ceases to surprise me how true it is. Bryce is now 27, almost 28, months old but Monday (9/26) will be the second anniversary of the day he was supposed to be born. So our almost 2 1/2 year old is only just now supposed to be turning 2.

It's funny how I'll never be able to forget how early he was or that he shouldn't be as old as he is. But it's impossible not to also let the day to day bog you down in how far behind he is and how much work we have yet to do.

It's been a pretty mild few weeks on the home front. Bryce has added a new therapist to his menagerie - Suzy is what was titled Early Intervention Specialist but is now titled Developmental blah, blah, blah something or another. Sorry, but the new title is even longer than the old. Basically, she helps us troubleshoot how to get Bryce's play skills up to a level closer to either his actual or corrected age. He's still not stacking things, pretending, putting things in/taking things out (except to put in his mouth) or handing things over. But on a positive note, he does enjoy the heck out of banging stuff!

It's a work in progress that I'm beginning to wonder if it isn't related to other factors. Bryce's eye sight, physically, is pretty normal but his CVI (cortico visual impairment) means that his brain often times has trouble comprehending what the eyes are seeing. Additionally, many preemies and CP kiddos have trouble with sensory input. Usually they are over sensitive to it. But we don't know - since we can't ask Bryce - how his CP effects his senses. It could be that his eyes don't fully comprehend things that he sees and touches and it could also be that his hands feeling that thing don't give him enough input about the object either. Or it could be a complicated combination of both. Either way, he still obsessively puts EVERYTHING into his mouth. Which means he doesn't color with crayons or play on the ground at the park, it limits his play even more than he limits his own play.

But I'm glad for these new revelations since understanding is always the first key in unlocking the puzzle of Bryce.

Other than the new therapy on the schedule it's been surprisingly mundane around our house since Bryce's botox. We haven't seen huge improvements but he certainly seems to be looser in his legs and I know that his right hand is so far behind, and muscle memory trained to be fisted, that it would take many, many months before we'd see a real change there. We'll be visiting with the neuro in two weeks to see what she thinks and get her opinion on another round and/or higher dose. Time will tell.

Next week marks the time of year that all preemie moms loathe. Fall. Flu season. It's funny, because this has always been one of my favorite times of the year. I love the fall weather, the pumpkin patches and the feeling of the holidays being right around the corner. But they'll be forever tainted by the scare of germs.

We'll have our bi-annual check in with the pulmonolgist and I'm so hoping we won't have to start up the daily nebulizer treatments again. It's been a nice summer off from that nightly fight.

We also have Bryce's first developmental assessment scheduled with a Developmental Pediatrician who specializes in Neurology. It's my understanding that she'll spend a good hour or two with Bryce and I, seeing what he does and asking me a lot of questions. She'll then assess where he is developmentally, compared to his actual and adjusted ages, and make some recommendations for how to catch him up.

I'm not going to lie, I fought for his assessment because I think it's important to have a clear understanding of what we're working towards and just how far we have to go. But I'm so nervous it's keeping me up at night. No mom wants to hear that her child is a year or more behind, especially at age 2, but that's what I'm preparing myself for.

Please keep us in your thoughts as this week looms just over the horizon. I promise to return more quickly this time with the results of our two appointments next week as well as the neuro follow up on Botox.

Thanks again everyone for keeping up with us - it means the world!

xoxo,

Botox Baby

2011-08-11T23:14:00.003-05:00

As usual, life with Bryce is hectic.

In the last six weeks we've gone to two new specialty care clinics at Dell: orthotic (bones, braces, etc.) and spasticity (Cerebral Palsy, neuro, high tone issues...). The clinic setting suits us well - despite half day visits that start with 5 a.m. wake up calls - because of the team approach. It reminds me so of our days in Dell's cutting edge "family centered care" NICU. We see a specialty doc along with a therapist or two, often another specialist as well as an RN and social worker. It's quite the experience.

Both times Bryce has fallen asleep waiting to see the "big man" and one of those two times I've felt like my opinion, my perspective, my questions ...well, mattered. Outside of the NICU at Dell, despite many, many, MANY doctor visits with and for Bryce, I've seldom gotten that feeling.

It was surprisingly unnerving and endearing when Bryce's neurologist teared up at seeing how much has begun doing since her last visit, six months ago. She and I have had the hardest relationship, pushing me to the brink of sanity more than once. She's not the touchy, feely type but that wasn't it - I just never felt that we got the time of day. But at the clinic she took the time to sit (literally) and look me in the eye. She explained very simply that it brings her to tears to see how far he has come, how much he has overcome. That reading his history, seeing him a year ago as a 14 month old infant, she never would have imagined he'd be who he is today.

Well, me either. I mean, I've fought for it, encouraged it, hoped and dreamed for it but always with that bit of hesitant optimism that is ingrained in me.

And let's be honest, it is so easy to get caught up in the never ending daily to do lists: one hour in stander, 20-30 minutes sitting practice, 20 minutes on all fours, spio (compression garment) vest, hand splint, messy play, reflux meds, vitamin, signing practice, never stop talking to him...plus the usual feeding, cleaning, diapering, dressing, snacking, napping, grumpy time.

This is a hard job, ya'll but I love it. Never does a day go by that I don't think how lucky I am, how much I love this little boy (no longer a baby), how astoundingly proud of him I am.

Well, another first is on it's way. And it's not what you think, what strangers never fail to ask after asking his age...he's not quite to walking. Soon enough, I see it in his eyes like the day I knew he was finally off the ventilator for good - that determined look that all at once scares the sh!t out of me and swells me with pride I never could have imagined for someone outside of myself before Bryce.

No, I'm talking about botox, baby. As usual, I'm cautiously optimistic. The neuro is rather confident that shots of botox directly in the muscles of Bryce's right shoulder, forearm and hand, as well as both hips, may give him the opportunity to escape the tightness (aka spasticity, high tone) of CP enough to develop the use of those areas enough on his own to sort of overcome the troubles of CP.

It's a scary decision to make. There is no guarantee and botox is actually a poison at its root though the makers and doctors adamantly declare it's safety. We'll start with a first round, this Monday morning, expecting the peak of effectiveness to take place about six weeks later and the effects to wear off around three months.

They took video of him with two physical therapists at the clinic so that we can be sure of results, as mild as they may first appear. If we are comfortable, we'll follow up around then with another round and presumably continue with quarterly rounds for the foreseeable future.

So off to Dell we reluctantly will go on Monday morning. They'll do the shots under light anesthesia (gas) so as not to traumatize him with the painful 12-15 direct to muscle injections. He should wake up shortly there after and if all goes as planned, we'll be home in time for lunch. Wish us luck!

The Long Awaited Sundae Video

2011-07-05T17:39:00.002-05:00

Sorry it's taken me so long to get this up but I think you'll find it was worth the wait.

We took Bryce to dinner at Buca di Beppo on the night of his 2nd birthday. The food and the service were so-so at best but it was really nice of the waiter to surprise us all with this birthday sundae for Bryce.

You can pretty well tell from the video that he's never had anything like this before. He's had ice cream on a select few occasions and he's enjoyed unsweetened whipped cream on many occasions but never even a bite of a brownie.

The sugar made him a little emotional as you'll see...enjoy!

Bryce's New Trick!

2011-06-29T16:49:00.002-05:00

Bryce has just this week (despite being sick) mastered pulling to stand inside his crib. He's very proud, as you can see on his face, and loves to show off!

Not bad for a micro-preemie, huh!?

Can you believe this!!??

2011-06-27T16:50:00.001-05:00

It's been months and months of long, tortured therapy but we are well on our way to having an accomplished "sitter" in our household!! Go Bryce Go!

What a Week...

2011-06-13T10:14:00.003-05:00

My sincere apologies for my lack of posting. As I was telling a dear friend at Bryce's party on Saturday, I sometimes feel like my blog has to follow the Thumper's Mom Philosophy...you know, if you don't have anything nice to say, don't say anything at all.

I took Bambi seriously as a child and I guess it just stuck. I don't want to be negative and I don't want to be a downer, so when you see a lack of posts here at the blog it's likely a good sign that I'm trying to find a way to deal with something.

When Bryce was first born everything about our life was up side down, in side out and complete turmoil. These days are quite the opposite. We've settled into a routine, we rarely find that we have a medical emergency or new health issue to understand.

For the vast majority of the time, life is down right good.

But I do have my down moments.

I just prefer to bottle them up. And now that we're not in the midst of survival mode I'm able to do so much more effectively.

But my friend suggested that I be more honest - more like I was before. And since I respect and value her opinion I'm going to do my best to do just that.

Bryce's second birthday was just a week ago tomorrow but I've felt it coming on like a flu. You get a little sleepy, a little achy, a little less motivated and a little grumpy. No matter how hard you try to ignore the symptoms it always boils over into a mess of a day where you get nothing done but rest and try to let your body recover.

I HATE to equate Bryce's birthday with the flu. But let's face it, that was the best and worst day of my life. And I know that for most of our friends and family it's hard to understand how something that happened two years ago could possibly still be an open wound. But I'm here to say, honestly, that it absolutely is.

The saving grace is my precious baby Bryce - who soon I won't be able to call that anymore so I'm getting it all in while I can.

I had an email conversation with another mom last week who has two preemies. Her first is turning 11 this year and she said that she only now is able to fully embrace the celebration of his birthday without the bittersweet emotions.

It was so nice to hear from someone who got it. It's hard to find another human being who really understands these feelings. So what do you do with them? Well, I bottle 'em up, shove 'em down and keep on moving. I even went to the NICU last Monday night to do my weekly parent to parent volunteering. Wow, probably not a good idea.

I stood at the scrub sink almost exactly two years to the day from the first time I stood there and scrubbed in. The memory of the terrifying thought of walking in to see Bryce in the NICU for the first time is un-repressable. I remember so well that feeling of not knowing where I was, how I got there, what would become of my son, my life, my future. We were so sure he couldn't survive that I was in a constant state of trying to figure out how I would deal with losing my baby.

How would I go on? How would I ever find a way to be happy? How would Caleb and I get through such a trauma?

Well, he did survive - oh boy, did he! But our body remembers, the mind remembers. If you spend weeks and months preparing for a loss it doesn't just go away. It lurks in your subconscious, ever-ready to surface if necessary. It haunts your thoughts and tugs at your soul.

So there it is, there is the awful truth. As I celebrate the birth of my son I'm still working through the trauma of that birth. As we surround ourselves with friends, family, sweets and smiles - inside I'm fighting tears, I'm wondering when the next bad thing might happen, I'm fighting to stay above water until it's all a memory.

That's my coping method and while it might not be doctor recommended it's getting me through. I've been off the Zoloft for the better part of a year - the emotions may be raw and they may make me feel vulnerable but I'm feeling them, I'm dealing with them and I know eventually I'll be whole again. At least mostly.

So, I'm sorry there was no big happy 2nd birthday post. I just couldn't muster it. But I promise to post the video of Bryce eating his first brownie sundae on his birthday later today or maybe tomorrow.

And I thank my friend for suggesting openly that I get over my need to please and just be be honest. I hope it's okay with the rest of my readers as well.

Thank you all for your love, support and fellowship.

Feeding Woes

2011-05-11T15:23:00.000-05:00

Hand to Hold is a local non-profit that I've talked much about before. They have a special place in my heart for many reasons and I'm always happy to help them when and if I can. Yesterday, they asked me to write a little something about our feeding issues for an upcoming project their working on. As I began to put the summary of Bryce's feeding issues down on paper it occurred to me that perhaps I should share with all of our readers as well.

Many of you and most parents can't appreciate the struggles related to feeding babies that have been intubated and/or hospitalized for long periods of time. It's hard for the parent of a normally developing child to really get the stress but I think most can imagine that they'd be terrified if they couldn't be sure their child was getting enough nutrition, enough fluid, enough nourishment to not only thrive but just to survive.

This is a very real problem for many parents and this is our "feeding story:"

Bryce's extreme prematurity meant that at birth he was unable to breathe on his own. He spent five long months in the NICU at Dell trying first to survive, second to breathe independent of equipment and finally to nourish his body with my milk.

It would prove to be breathing that would be Bryce's biggest challenge. It took four months on and off various ventilators before he was finally successful on high flow nasal cannula. Of course, as all preemie moms are aware, that just meant it was time to face feeding - no small hurdle in itself.

After being intubated with a breathing tube for so many months Bryce's "suck muscles" were weak and trying to feed from me or a bottle took so much energy that he would tire out well before filling his belly. We supplemented with tube feedings by way of an NG tube for weeks while trying to build his eating strength and coordination. We were grateful that he rarely aspirated while feeding but as time wore on it became obvious that if we didn't take Bryce home with a feeding tube he would either remain in the NICU for the forseeable future or end up catching some nasty hospital bug.

So we swallowed our fears and began our NG placement training. There really is nothing worse in our books than holding your infant son down while shoving a tube up his nose, down his throat and into his tummy. Oh and be sure not to hit the lungs, which is really just luck (especially since he's screaming the whole time), because then when you start the feed you may drown your child. Not sure if it's in the lungs or stomach? Well when you're in the hospital under strict supervision for placement you just take a quick listen with the nearest stethoscope but when you mention buying one for home use your reprimanded for being to NICUish and not enough Mom-ish. Oy vey.

It's easy to laugh off the stress of the ordeal as we look back now but it really was a true test for us. We now compare all things to the torture of placing an NG tube - ALL things.

Hand, foot and mouth disease, suppositories, baby puke and diaper blow outs all pale in comparison. If there were such a flag that read, "If I can place an NG, I can do anything," I'd proudly wave it high. I'd even get one of those cheesy mini flags for my car. Maybe one for Caleb's truck too.

Eventually though they let us take Bryce home with us and just like all the cliches you hear, he almost immediately began to grow bigger and stronger. After just a few short weeks at home we took out his NG tube, for what would turn out to be forever.

We hardly followed the book, or the doctor's advice for that matter, when we decided enough was enough. But it was the holidays and we felt that as Bryce's parents we knew him better than anyone. So together we made the joint decision to pull the tube and hope for the best. We could only pray that lacking those extra calories he was getting through the tube his desire to eat enough on his own would kick in. And thank the Lord, it did.

We were blessed and oh so grateful to place it finally away in the medical keepsakes box where it remains today.

(Yes, we have a medical keepsakes box. And it's full of blood pressure cuffs, hospital ID tags and myriad other odd momentos. No, I don't know what I'm going to do with it so for now it just stays safely put away in the closet. Yes, I know that's weird. And, no I don't care!)

Of course, our feeding struggles by no means ended the day we decided Bryce would no longer get supplemental feedings by way of NG tube. But we know enough to know just how lucky we are that Bryce's oral aversion was minimal. He always liked pacifiers, seemed to enjoy taking his milk from a bottle and overcame a texture issue with stage 2 foods in just over a month of daily trials.

We're painfully aware that this isn't the case for all parents but that is why Hand to Hold is so important. Because they have the unique ability to put those parents together and let them explore possible solutions, vent about frustrations and take solace in knowing they aren't alone.

I can only hope that our story will help another family along the way.

POST traumatic stress disorder

2011-05-05T09:56:00.002-05:00

I guess the thing about PTSD is it can hit you anywhere, anytime. You might be perfectly happy and just enough distracted by this, that and the other that you don't even see it coming. That's how it happened to me this morning.

Standing in line at Starbucks I recognized a glassy-eyed look on another woman's face. I saw in her blank stare that while she was standing right next to me smiling politely she was all together somewhere else.

My mind instantly and without my control went to the days that Bryce was his sickest and I'd escape the NICU for 10 or 15 minutes to walk to the nearby Starbucks. I was never where my body was, my mind was always with Bryce.

There were so many days that I spent all of my energy fighting back the sinking feeling that I was going to lose my precious baby boy. This child who had spent so little time growing inside of me and even less time where I could see him and occasionally touch him. I felt like at once I knew and loved him more than anyone else in my life and like I hadn't yet had a chance to really know him and love him for who he could be.

So I'd walk around Dell, down the busy streets in the blazing heat to a familiar place, because all Starbucks are the same, and I'd order my usual. I'd stand there in line and smile vacantly at strangers wondering maddeningly how all these people could go about their lives so nonchalantly, how could they go for coffee, laugh at dumb jokes and worry about their petty problems.

Didn't they know I was losing my baby boy!? Didn't they know that as we stood there he was fighting for his life!?

It's been about a year and half since Bryce came home from Dell and just a bit longer than that since we've been sure we would get to see him grow bigger and be his own person.

It seems it's just long enough to distract yourself laughing at dumb jokes and worrying too much about things that don't really matter. But low and behold, it's not long enough to forget that awful feeling, it's not too long to find yourself suddenly fighting back tears and feeling as if you'll throw up while waiting for your morning coffee.

Every day, thousands of babies, just like Bryce, are born too soon, too small and often very sick.

Wouldn't it be an awesome tribute to Bryce's incredible fight to have a huge group walking in his honor this Saturday?

But, if you can't walk with us, please help by donating to our team. To make a donation or sign up to walk with us visit the teamBAM! page.

Thank you for helping us support the March of Dimes in their mission to give all babies a healthy start!

March for Babies THIS SATURDAY

2011-05-03T23:16:00.003-05:00

Since you've all heard or read my plea regarding the March of Dimes I'll spare you the long version and just say this...

Medical practices and medicines responsible, at least in part, for Bryce's survival were discovered by March of Dimes' researchers on money raised by them and people like you and me.

Please help us help them save even more babies lives by walking with us this Saturday, May 7th at 9 a.m. at Auditorium Shores right here in Austin, Texas.

What better way is there to spend your Saturday morning then helping save babies lives?

Come by, see Bryce and walk with us!

OH AND DON'T WORRY IF YOU HAVEN'T SIGNED UP TO WALK, YOU CAN DO SO HERE AND YOU DON'T NEED TO MAKE A DONATION TO SIGN UP (THOUGH WE'D SURELY APPRECIATE IT!)

teamBAM March for Babies Walk Day Details:

We'll be there by 8 a.m. with light breakfast snacks, coffee and ... t-shirts!!
The walk starts at 9 a.m.
teamBAM will have a blue 10' x 10' tent set up just for our team where you can meet up with us anytime before 8:50 a.m. (after that find us in the crowd getting ready to walk)
When you enter Auditorium Shores from Riverside Dr. our tent will be on your left (as you walk toward the water) kind of between/before the large BBVA Compass tent and the huge Family Teams Tent
We'll also be around after the walk for at least an hour for fellowship and ... t-shirts!!

Parking:

Riverside Drive will be CLOSED from Lamar to 1st St.
Paid Parking will be available at:

- Palmer Events Center Garage at 900 Barton Springs Rd for $7
- One Texas Center Garage at 505 Barton Springs Rd for $7
- Austin Convention Center at 500 E. Cesar Chavez for $8

Don't park at Hooter's, Auditorium Shores lot, Homestead Hotel or in nearby neighborhoods as they will be towing. (And please don't make me tell you I told you so, ha!)

Miscellaneous:

Tug's BBQ will provide sausage wraps and chips for just $1 and part of the proceeds will go back to the March of Dimes!
In an effort to go green there will not be water bottles provided this year but there WILL be "WaterMonsters" to fill up your own cups/bottles

teamBAM!

2011-04-25T12:33:00.001-05:00

It's that time of year again, the March for Babies is Saturday May 7, 2011 at Auditorium Shores.

PLEASE walk with us, buy a t-shirt and help us give every baby a fighting chance!

T-shirts are only $20 this year and $9 of that goes straight to the March of Dimes. (Yes, that mean's they're cheaper than last year AND each shirt raises more money for the babies than last year's!)

Want one? You know you do!

Just shoot me an email with how many and what size, I'll order them and pay for them and you can pick them up the day of the walk or I'll personally pay to mail it to you if you can't make it on walk day.

I've been very busy with Bryce, work and my March of Dimes parent to parent volunteering and so have unfortunately fallen behind on our teamBAM works for the year so I need to know ASAP if you'd like a shirt.

PLEASE let me know today or tomorrow so I can make sure we all get them!

Here is what they look like...

teamBAM! t-shirt front:

teamBAM! t-shirt back:

If you're gett ing this email, reading this blog post or otherwise seeing this than you know that Bryce struggled for many, many weeks in the neonatal ICU after his extremely premature birth just to survive. He weighed only 1.5 pounds at 12" long, his eyes were fused closed for weeks and he could not breathe on his own for many months.

Every day, thous ands of babies are born this way: too soon, too small and often very sick.

And it's the March of Dimes' research that is helping these babies fight for their lives. It's the artificial surfactant and nitrous oxide therapy that were discovered by researchers funded directly by the March of Dimes that gave our Bryce his fighting chance. And look at him today.

Wouldn't it be an awesome tribute to Bryce's incredible fight to have a huge group walking in his honor May 7th? We think so! That's why we've created teamBAM!, and that is why we hope you will walk as part of teamBAM at Auditorium Shores on Saturday, May 7th at 9 a.m.

If you just can't make the walk with us, please help by donating to our team or purchasing a t-shirt.

To make a donation or sign up to walk with us visit the teamBAM! page, to order a shirt email me with the size and quantity you want.

Thank you for being a champion for babies!

Another Family Sunday, Another Bryce First

2011-04-19T07:25:00.005-05:00

Bryce has the uncanny ability to do a thing out of the blue as if he's been doing it forver (and you haven't been working tirelessly to get him to do it for months) and then not repeat said action for what seems like forever. It's ironic, it's funny to quip about but it's so frustrating!

For instance, just two and a half weeks ago I posted that Bryce had pulled up for the first time. I was very excited. So excited that I forgot about his track record on these kinds of moments and expected he'd do it again in a day or two. Well, two weeks to the day, with the same occupational therapist here to see, he pulled up for a second time.

It's like when he said apple, or up or yummy. He said them - clearly. But once and only once. It's also kind of like how he has figured out that I can't not laugh when he sticks his tongue out and turns his head up to a food offering at meal time. Except that one he's beginning to make an unfortunate habit out of. (Note to self: must stop laughing at inappropriate behavior.)

That is all besides the point though. My point is actually that we had a splendidly lazy Sunday. The weather was spring-like and beautiful and we were blessed with surprisingly few things to do. So we took Bryce for his first picnic out on the green lawn behind the Arboretum. We had a great time lazing around on the soft, lush grass.

And Bryce FINALLY drank from a straw. Not just a straw, but also a sippy cup. It's the little things that seem to bring the greatest joy. He picked up his cup, took a big gulp like he'd been doing it his whole life and ... wait for it... is still doing it!

It's like he found his desire for fluids finally and is making up for lost time. I must have spent several minutes through out the day today just sitting back and taking in him drink from his cup.

I know it's silly, but this little achievement is huge for me. Bryce may be behind, very behind even, but he's getting it all - in his own sweet time, of course. Bryce style - Bryce time.

Here are a few pictures from our picnic:

Bryce and Mommy

Bryce and his very first, very own hamburger. He ate very little of it but enjoyed very much of what he did eat. (By the way, 5 Guys Burgers and Fries really are good - just ask Bryce!)

Bryce sitting!!!!!!!! By himself!!!!!! He does this on occasion. We've only been working on it physical therapy (and every other day of the week as well) for months and months. He just doesn't have the desire to sit for long, he'd much rather be going, going, going.

Wah, Wah, Wah

2011-04-13T21:57:00.003-05:00

It's been a long few days. Bryce starting feeling poorly late last week and by Saturday morning, Caleb's birthday and the day of his and Jeremy's annual shared birthday crawfish boil at our house, I'm taking Bryce in to our pediatrician's after hours clinic.

Turns out he has an ear infection, only his second ever and the last one was the day of his first birthday party. Did I mention Bryce still has quite gotten the whole timing thing down? Poor guy.

Not to help matters much, both Caleb and I had been feeling progressively worse since late in the week as well. But we put on a happy face and had a truly great time on Saturday. It's so nice to celebrate someone who means so much to us and does so much for us - to little or no fan fare most of the time. I just wish Bryce had been feeling up to celebrating too.

Unfortunately, Sunday meant yet another day of not feeling great for our entire household. We took it easy, blamed the pollen and went to bed early. Monday morning though it was hard to argue that I too was down right sick. I'll spare you the disgusting details and just say that when I finally gave in and drug myself to the doctor yesterday I was diagnosed with not one, but two, awful ear infections AND an upper respiratory infection. Wouldn't it be easier just to say the entire top half of my body was snot logged and miserable? Seems a more fitting description to me anyway.

It made me realize a couple of things though.

First: poor Bryce! If I feel this bad he must be feeling pretty awful himself. He's not sleeping through the night in almost a week now and thank God Caleb's been able to stick around and help, I don't know what we'd have done otherwise.

Second: I haven't been sick - like really, really sick - since I had my tonsils out about 5 years ago. Boy, I do not miss those useless bacteria-laden tissue balls in the back of my throat one stinkin' bit.

Third (and this one is never surprising for long): you so do not appreciate how awesome it is not to be sick until you are. Bummer about life, that one is.

So, as I lay me down to sleep all I ask for is a full night's rest. I hope Bryce finally gets to sleep through the night and therefore I do as well. Though since he's 4 days ahead of me on the antibiotics I'm not going to get too optimistic about my own prospects. In case, like most adults, it's been ten or more years since you've had an ear infection - they freakin' hurt!

Wish us luck!

Night, ya'll,

To Be or Not To Be

2011-04-07T08:25:00.000-05:00

I was just thinking the other morning that we are so blessed to have so many wonderful people and organizations to turn to for help and support. Bryce's preterm birth was catastrophic, it was at once the single best and worst thing that has ever happened to me. It tore my heart into tiny pieces and nearly two year later I'm still struggling to mend it back together.

But let's face it, I'm no spring chicken and if there were another baby in our future it sure seems like that better be the not so distant future.

This is a topic that weighs heavily on my mind. On any given day that you ask me if we plan to have another child (and seems that I am asked almost daily) I might give you a different answer.

The truth is that I don't know. And furthermore, I don't know what the right answer is.

I am an only child. It's got its perks, to be sure. But I'll never know what it's like between siblings, that person who's known you your entire life, seen you at your worst (i.e. braces, junior high, bad hair) and your best (mother hoood). The one person who you don't mind calling at 3 a.m. when your freaking out over this, that or the other. I see it with my friends and their siblings. I see the struggles and the tension as well, but it's the unbreakable bond I envy most. It's that bond that I can't quite understand that I want for Bryce.

I want to be able to give Bryce a partner in life. A partner who looks out for him, pushes him to be his best, a partner in crime and family for after we're gone.

It's funny, because just as I'm searching endlessly for answers to this burning question I come across the Hand to Hold newsletter in which the article, "Pregnancy After Preterm Birth or Loss" is conveniently placed.

It's a lot of information I already had but it's also some new insight. And all in one neat little package that I can really sink my teeth into. Thank you Hand to Hold, for continuing to surprise me with your support and resources.

Of course, the decision involves many more factors than any article could possibly address. It's a very personal decision in the best of situations. It's a decision in which a black and white right or wrong can never be.

And then there's the financial aspect. Individual health insurance policies, like ours, are ridiculously expensive. But the only option for those of us who don't work for corporate entities with the large numbers of employees necessary to offer a group plan. You'd think for the steep premium they'd offer maternity benefits but oh no, pregnancy is, after all, a "desired" state.

With a pregnancy history like mine (going from lowest of low risk to highest of high - literally over night) there is simply no way we could ever afford to pay out of pocket to have a second baby. There would be a likely cervical cerclage to begin with, followed by steroid dosing before we were even clear to begin trying, then cervical monitoring every couple of weeks from the beginning, progesterone supplementation after only 16 weeks, and well, the list goes on and on.

What will be will be. But it sure helps to vent to the world about it. And it doesn't hurt to remember how lucky we are to have our little miracle with us today. The first time I saw Bryce I could only think that he wouldn't make it, that there was no way he could survive the turmoil of his birth.

But look at him now!

Another First!

2011-04-04T23:48:00.003-05:00

Today Bryce finally found the proper motivation (trouble) to pull himself up.

Mind you we've only been working on this for about a year now. We've actually been coaching him for months on how to pull himself up onto the rail of his crib. We work on it daily, often many times a day.

He's always proud when he gets there but he rarely really does all of the necessary work. Don't get me wrong, it's not his fault. His right hand (aka "Righty") stays clenched into a tiny, fisted, balled up mess of fingers and tension whenever he's struggling to do something. It's pretty hard to pull up on things one handed.

But we've learned that if an object is far enough away that Bryce has to fully extend his arm to reach for it he's more able to get his right hand fully open and to then close it onto the object.

And today the stars all aligned in just the right way so that Bryce was able to leverage off the ottoman a little, the couch a little, reach way up to the top of Mommy's scrapbooking bin while pulling his knees up under him and then getting all the way to his feet all by himself.

And as if that weren't enough - his Occupational Therapist was here to see the whole thing. Because otherwise I'm pretty sure there would be some skeptics in the family.

It was an amazing, unbelievable sight. I small "step" for an average boy but a remarkable achievement for this extra special boy!

And I even had the opportunity to snap a couple of quick pictures:

And here he is already thinking about all the other things he can get into from "up here!"

Adios, Synagis!

2011-03-30T14:34:00.002-05:00

During the flu/RSV season this year and last Bryce has been receiving monthly synagis shots. They're essentially a very, very expensive ($1,800/shot) immunization. We had to go through a lot of back and forth to get them covered this year by insurance since Bryce had been home a full year. But in the end the did it and he didn't get sick.

Today Bryce had his last Synagis shot - likely forever!

We saw a special pediatrician monthly for half the year for these shots so we had grown accustomed to the staff at ARC Far West's pediatric clinic. As Dr. Lingle left the room today (after bragging about how great Bryce looks) I overheard her tell the nurse that it was bittersweet.

I think, no - I know, that if Bryce understood he would disagree. He would be ecstatic not to have those awful pokes every month. I know I'll miss the sweet ladies of Dr. Lingle's office but I sure won't miss holding him down for that huge needle!

Swinging & Grilling

2011-03-27T16:27:00.000-05:00

Bryce loves his swing, Daddy loves to grill...

and my favorite thing to do is hangout out on the porch pushing Bryce in the swing and enjoying Caleb's cooking!

It's a Good Day

2011-03-27T14:10:00.000-05:00

We had a yummy breakfast at Central Market Cafe, followed by a stroll through the Zilker Garden Festival at the Zilker Botanical Gardens. Now, with bellies full of Zilker nachos, we're on the Zilker Zephyr for a train ride through the park!

What more could we ask for? Maybe a bit of sunshine, that's it.

First Day of School

2011-03-24T17:25:00.000-05:00

Bryce had his first day of "school" today - he began his two days per week schedule at Bright Star Academy.

As you can see, it was no big deal to Bryce. Mommy on the other hand nearly had a panic attack, despite several visits over a shortened day, spying via the lobby cameras and never being more than 5 miles away.

Barreling Into Our Lives

2011-01-16T08:32:00.002-06:00

I believe that most of our readers are familiar with Bryce's tumultuous beginnings and most of you also know that there are a hand full of organizations that I credit with helping us to get through the hardest time in our lives. One such organization is Hand to Hold, a local Austin non-profit that works solely with the parents of preemies by providing resources, peer mentoring and community to a group that tend to otherwise feel thrust out into a world of doctors, therapists and special needs all alone.

Well, this month we are the highlight family for Hand to Hold's website. Please take a second to refresh yourself on the story that brought you to us all those months ago and consider supporting this amazing organization:

Barreling Into Our Lives

Wait a minute!

2011-01-07T07:53:00.000-06:00

What happened to my little baby!?

New Year, New Bryce

2011-01-02T13:51:00.004-06:00

With 2010 soundly behind us I now have the ability to look back at a full year of having Bryce home with us. We were busy, busy, busy trying to help him be all that he can be (to knock off the army).

We had 52 straight weeks of physical therapy, occupational therapy, speech therapy, dietician counseling, doctor visits and specialist check ups. We also had some real moments of panic and some very real moments of awe. We learned that just because there is a tried and true way to teach a CP preemie how to do new things there also may be an equally effective alternative. We've spend a lot of time pushing, pushing, pushing only to be left frustrated and defeated. But then a week later see the fruits of our labor come into a full bloom.

And so, as this new year begins we begin anew with our efforts to afford Bryce every opportunity we possibly can to be the best Bryce he can be. We have the support of our tireless family, some wonderful organizations (Hand to Hold, March of Dimes, Graham's Foundation) and the best therapists we could possibly ask for to help us navigate this winding road.

What on the itinerary for 2011, you ask? Well, crawling. And sitting. And words. And eventually, hopefully walking.

In 2010 we witnessed Bryce progress from essentially being a newborn on oxygen with serious feeding issues, who just so happened to actually be 6 months old, to being developmentally a 6 month old who rolls, babbles, mimics and loves to make you laugh. It's not as much change as a "normally developing" baby would make in a year but it's truly remarkable for Bryce.

Unfortunately, for Bryce we now know how much he is capable of. And so our immediate goal is to put almost, kind of sitting and rolling as a means of transportation behind us to focus on a Bryce who sits at will for extended periods of time and uses crawling as his means of getting where he wants when he wants.

And we're off to a great start already. My dad and I are working on an "anti-rolling device" that will make rolling impossible for Bryce while on the floor. He mostly hates it but as you can see from the videos from yesterday with the prototype, he's taking "baby steps" already.

Just One Good Push

Progress

We thank you all for continuing to stick by us as 2010 flew by and 2011 begins. May you all have a wonderful, productive and rewarding new year!

Preemie Power Video

2010-12-21T16:59:00.001-06:00

I know we've been MIA and I'm so sorry for that! This time of the year is always busy and we're hosting an open house for Christmas weekend so it's even busier than usual. BUT I'm not complaining because I love Christmas and all the family and friends that gather around.

In an effort to tide you over I thought I'd offer this wonderful video. It's a recap of the Preemie Power Photo Contest in which Bryce (aka the Amazing Bryce-anator) was named one of the winners.

The short video brought a smile to my face and I hope it will do the same for each of you!

Thanks for continuing to support us! And check in on us! And we'll be back in full blogging force before you know it!

Much love and happy holidays to you all!

It's that time of year

2010-11-30T22:56:00.001-06:00

I just love this time of year! I have many fond Christmas memories from my childhood and I never knew how much it would mean to me to begin to build memories like those with my own family. I feel especially blessed this year to have Bryce to share the season with. And this year we're beginning a holiday tradition of opening our home for Christmas weekend to ALL of our friends and family. I'm so looking forward to a house full of family, friends, food and laughter - what more can you ask for for Christmas?!

One of my fondest Christmas memories from childhood is our annual trip out to Elgin, TX to the Elgin Christmas Tree Farm. This year, on our way home from a great Thanksgiving trip to Louisiana and then Houston, we made our little family's first annual trip to the very same farm from my childhood. So much of it was just as I remembered, from the hay rides to the hot chocolate and eventually, after much searching, walking and deliberating, to the discovery of the "perfect" tree.

We opted to carry Bryce (poor decision?) so he could be a part of the action. He really seemed to appreciate it, despite the wind and chill, as you can see here.

And after a long, long hunt - we finally found it!

And so Caleb went right to working cutting it down for us.

And Bryce and I snapped a quick picture with our tree before Caleb hauled it back to the farm entrance so they could shake out the loose needles, bag it and measure it. At 8' 6" it fits perfectly in our living room and it may be a little crooked and have a couple bare spots but the memory is just perfect.

So now the endeavor to get the tree decorated, the outside lights up and the indoors festively adorned has begun. I'm determined to take it slow and enjoy every second.

In the meantime, I also had the opportunity to get our Christmas cards ordered today. We ordered them from shutterfly, who have some great designs at pretty reasonable prices. I can't wait for them to arrive - not only so I can turn them around and get them right back out - but so I can see them too! Here's a sneak preview:

With Love Chartreuse Christmas 5x7 folded card

Make a statement with custom Christmas cards at Shutterfly.

View the entire collection of cards.

I am forever indebted to Candi (Candi Coated Photography) for the adorable pictures on the cards. She did an amazing job of capturing our family despite unruly wind and a cast of clowns. If Candi hasn't taken a picture of you and your family yet you're missing an opportunity to capture a moment in time perfectly. You can check out Candi Coated Photography on Facebook too! Thank you, Miss Candi - we love you!!

The Amazing Bryce-anator!

2010-11-14T15:21:00.001-06:00

We are thrilled to announce that Bryce won the Preemie Power Photo Contest today from Hand to Hold!! I'm not even completely sure what all he won but here he is at the event in his new cape flying above his bounty of loot!

Bryce was such a good boy! He met his first clown and got his first balloon animal, a courageous orange lion. He also met lots of other preemies who were cute and so amazing - little babies who've been through more in their short lives than most people will ever have to endure. I'm grateful for this wonderful organization which will provide Bryce a community of others he can relate to as he grows up and finds his way in the world.

Thanks again for all of your support and I'll be sure to tell you all about his many prizes once we've had a chance to go through them ourselves.
Sent on the Sprint® Now Network from my BlackBerry®

Oh the Anticipation!

2010-11-14T11:06:00.003-06:00

Today is the day we find out how Bryce fared in the Preemie Power Photo Contest. No matter what the celebrity judges think I know Bryce is, and always will be, our super hero!

Don't forget that November is National Prematurity Awareness Month. Which is why Hand to Hold is hosting the Preemie Power Photo Contest. The idea is that we can help raise awareness about prematurity by celebrating some of our local preemies, our "preemie superheros."

Today is the Preemie Power Event which is celebration of Hand to Hold's first birthday, a family friendly fall festival and where we'll learn the winner of the photo contest.

Thanks to all of you who support us by keeping up with the blog, sending us sweet comments, voting and spreading the word about prematurity. I can't imagine where we'd be without all of the support of our friends, family and friends of friends, family of friends, friends of....well, you get my point.

Check back later today for the final results and have a wonderful Sunday!

Final Plea

2010-11-10T14:10:00.002-06:00

Okay, so today is the last day to get a vote in for Bryce as Super Preemie...and it's the easiest vote you'll ever cast! Promise.

Literally two clicks is all it takes. No sign up, log in, survey or any of that junk. Just click the link and then click the "Vote" button.

You don't have to have a Facebook account and you can vote from every computer, cell phone, Ipad and Iphone you can get online with. But you can only vote from each once per day and today is the last day.

Bryce was stuck in 8th place for the first week or so and then bumped up to 7, back to 8 and now has been steadily in 6th for the last couple of days. But there are winners for 3 age categories and those categories are all jumbled up in the ranking on the website so we're not sure just how close Bryce actually is to winning.

Please take a second to vote for Bryce and raise awareness about prematurity at the same time. Heck, it can even be your good deed for the day!

Here's the link:

http://wildfireapp.com/website/6/contests/65899/voteable_entries/9898644?ogn=website&order=votes

And finally, here is your prize for your much appreciated vote(s):

Bryce's First Year in Images

2010-11-08T13:10:00.002-06:00

I'm working on a video for Graham's Foundation to demonstrate the meaningful work they are doing to support the parents of micro-preemies. A lot of organizations do work for children, babies or other worthy causes but few, if any, concentrate only on micro-preemies.

Needless to say, as Bryce himself was a micro-preemie, this is a cause near and dear to my heart. And I'm so happy to have the opportunity to do something for them.

While familiarizing myself with the cool online software they have available to them, Animoto, I took the opportunity to quickly put together a short video about Bryce's short life.

Bryce Alexander - Bryce's First Year in Images

I hope you enjoy it as much as I have. I tear up a little every time I watch it. It's funny how time heals even the deepest wounds. I think I've mentally blocked so much by patching up those wounds with the sweet kisses and toothy grins I'm blessed to now be able to enjoy every single day.

NICU Reunion

2010-11-07T10:05:00.006-06:00

Well Thursday marked Bryce's one year anniversary of when he finally came back to the place he was born - home.

Man, time flies.

The NICU seems all at once a lifetime ago and just yesterday. And we've come a long way in that time. Bryce was on oxygen, a pulse oximeter to monitor is oxygen levels and a nasal gastric feeding tube to supplement breast feedings with tube feedings. We were on strict lock down - no visits out unless absolutely necessary and few visits in but no children (aka little germy people) inside our home, period.

All of that is a thing of the past and although we have many struggles and hurdles yet to face we can look back and see that whatever it is, we'll figure it out. I'm one proud Momma of one amazing baby boy.

And what a better way to celebrate all of this than to attend the Dell NICU reunion yesterday? Bryce commemorated the event with his first tattoo - a "Proud to be a NICU graduate" tat on his bicep, of course.

It was a beautiful day and we had a great time visiting with all of our old nurses, respiratory therapists, neonatologists and friends of the NICU. It was really awesome to see some of Bryce's old NICU-mates too. Jaden has gotten so big that I thought at first he was someone else's kiddo - way to go Joanna! And Luke was sans helmet and as cute as ever! The Whitakers are one amazing family!

I also finished up my training to be the Dell NICU's March of Dimes parent-to-parent volunteer. I need a TB test, shot record and badge to finish up preparation for this exciting new role. I'm planning to make weekly visits to the NICU where I'll visit with any family on the unit and offer an "I've been there" ear. I just know that this would have been a priceless asset while Bryce was in the NICU and I'm so looking forward to the opportunity to do that for someone else!

There are only three more daily opportunities to vote for Bryce and spread the word about prematurity. Then we'll find out if the celebrity judges also agree that Bryce is the super hero we think he is at the Preemie Power Family Celebration on Saturday.

Please take a moment to click here & vote for Bryce.

Preemie Power

2010-11-03T21:40:00.002-05:00

Hand to Hold is a new non-profit doing something few have done here before, offering parents of preemies other parents of preemies to connect with. It's a simple idea with a profound possible effect.

My mentor is a woman named Stephanie with a tiny miracle of her own who has now grown into a charming and handsome little boy. They've encountered many of the same hardships as we have and are living proof that you can make it through. It's funny because although Stephanie and I have still not had the chance to meet face to face I know she's there for me in a way my oldest and truest friends simply can't be.

Of course those old friends are cherished and invaluable in helping us to normalize after the trauma of a premature birth and the ensuing emotional roller coast ride that is the NICU. They remind us who we were before and help us find our way back to that center, in whatever way that we can.

November is National Prematurity Awareness Month and many organizations across the country are doing hard, valuable and never-ending work to help more babies be born at term and healthy. And to help the parents of the children who aren't to cope and to navigate the world of having our tiniest, most fragile and helpless people depend entirely on us.

My wonderful friend Mary and I are looking forward to putting together our first fundraiser to raise money for Bryce's March for Babies team, team BAM!. Funds raised will help further the groundbreaking research that the March of Dimes continues to do and has done since FDR founded it in 1938 to find a vaccination for Polio. You'll be hearing much more about that in the coming months.

And then there's the Graham's Foundation, who sends out NICU care packages to parents whose babies are in the NICU. We received one completely by surprise while Bryce was in the NICU. It had some activity books, hand sanitizer, snacks, a Target gift card. More importantly though it contained a personal letter from the founders who had walked in our footsteps and taken the time to prove to us that we weren't alone in a world that felt so distant.

So in honor of National Prematurity Awareness Month Hand to Hold is hosting a Preemie Power Photo Contest. The idea is that we can help raise awareness about prematurity, the number one killer of infants in the U.S., by celebrating the astounding stories of some of our local preemies, our "preemie superheros." We've entered Bryce and coined him "The Amazing Bryce-anator!" His super powers include his inexplicable ability to overcome adversity and his use of slobber as a weapon against the evil tickle monsters of the world!

Please take a moment to vote for Bryce. You can vote up to once per day until November 10th when local celebrity judges will choose the final winners in three different age categories. We'll find out if they agree that Bryce is the super hero we think he is at the Preemie Power Family Celebration on Nov. 14 at Covenant Presbyterian Church on 3003 Northland Dr. in Austin. We can hardly wait!

Help, Please!

2010-10-25T09:04:00.000-05:00

Bryce has recently had the epiphany that his glasses are ever so conveniently omnipresent on his sweet little face. Which means anytime there is or isn't something else to chew on he may be inclined to swiftly reach up, pull down and insert said glasses into his mouth.

I know, it's cute ... the first time or twelve he does it before ...breakfast! But after that it's just a pain. They're not nearly as easy to pull up over his cute little nose and both ears to properly readjust for their actual purpose - seeing. And trust me, I know. I know because I do it countless times every single day.

And much to my disgrace yesterday I finally said a strong no with an ever so slight tap of the hand as he reached to pull them down. And he cried. And then I cried. And it wasn't pretty.

So what is a mom to do? How do you begin to say no to your child? Especially when they're ridiculously cute and sweet and pretty much perfect in every other way? I know, I know but I'm biased and rightfully so.

Anyone out there deal with the glasses issue with their little one? What's the trick? Please, please share!

Stander

2010-10-20T18:03:00.000-05:00

We had ACE medical equipment supply out a couple of weeks ago and they measured Bryce for his sit to stand stander. They also came out the week before last and brought him a loaner stander which he very much enjoys. Here he is on his first outside adventure while standing.

The therapist and medical equipment specialist said that it is especially good for him to go outside in the stander where there are bumps to provide vibration to his joints while he is bearing weight on them.

It just so happened that the stander was delivered on a Friday afternoon so Bryce was lucky enough to have his Abuelita, Daddy and pretty much the entire neighborhood out cheering him on as Abuelita wheeled him back and forth from stop sign to stop sign.

We've been trying to get him outside for walks in the stander as often as possible but it's really a two person job. The stander has four casting wheels on it and long metal bars that stick out in the back which makes it difficult to navigate, especially over those joints in the sidewalk that are so helpful.

When we can't venture outside Bryce enjoys reading his daddy's Car & Driver magazine before Daddy steals it away because it ends up slobbery and torn.

Okay, so he can't really read ... yet. But he loves to slobber on pretty much anything and next to that throwing things on the floor also provides lots of entertainment. As you can see happened to his lady bug book in the picture above.

All things eventually just get swept off to the left, but we are seeing marked improvement in his use of his right hand. Above you can also see that it tends to stay fisted closed, but it's no longer always with white knuckles and very often he opens it to attempt a grab at things that are closer to his right side. It's progress we're happy to take!

Bryce is really enjoying his new perspective on the world and Mommy is grateful for the good naps he takes after an hour of standing ;-)

Sweet Berry Farm

2010-10-14T15:48:00.008-05:00

Last weekend we took a short drive over to Marble Falls with Abuelita to visit the pumpkin patch at Sweet Berry Farm. We had a great time!

We ate fresh, homemade ice cream, bought the most perfect pumpkins of varying size and spent the better part of an hour picking beautiful zinnias for only $2/cup. If one is so inclined, which mom and I most certainly were, one can fit a LOT of flowers in a 12 oz. plastic cup!

Here's Farmer Leroy, he drove the tractor that took us from the pumpkin side of the farm to the flower side...

And here's Bryce amongst the pumpkins, he's the one with the blue glasses ;0
Bryce didn't see any reason to look up for a single picture, he was way more interested in investigating these strange new objects...
And here's a baby donkey that Caleb insisted I simply could not bring home with us...
And last but not least, here's Caleb and Bryce picking zinnias...

We had a blast making a day trip of the the farm and eating at the famous Blue Bonnet Cafe in Marble Falls with Abuelita. I highly recommend it for anyone looking for a nice opportunity to get some pumpkin pictures of their little ones. We'll be making the return trip in the spring to pick fresh strawberries - I can't wait!

Equipment Woes

2010-09-28T14:23:00.001-05:00

We've had our fair share of not your usual new baby stuff. There was the crazy traumatic birth and the five months in the NICU, with all of its unique NICU kind of crazy.

We've also had some equipment to contend with. There was the oxygen concentrator that hummed all day and night while Bryce was tethered to it for the first months we were home. And the tiny but mightily awful NG tube. NG as in nasogastric tube. As in you hold him down while I shove this tube down his nose and try not to land it in his lungs but rather in his belly and then let's make an educated guess as to which it did land in, all while he screams and I cry.

But back then we were more accustomed to how unusual our lives were. Everything in our lives was upside down. We didn't live at home and then we did but it didn't feel like home. Our old friends were new friends and our new friends (nurses, doctors and therapists) were old friends. Upside down was very much right side up to us at that point.

We discovered that if everything seems like its falling apart it probably is but if you try hard enough, cry long enough and pray loud enough you can probably survive it.

And slowly but surely our lives began to resemble those of other new parents, despite us having been parents for nearly half of a year. We returned to home and then to work, we went through the day on only a few hours of sleep but were rewarded a million times over by the joy of a baby finally in our home, in our bed, in our lives and forever in our hearts.

Then around thanksgiving Bryce smiled and our worlds changed forever. Every day every thing that we did was to illicit a smile from his sweet face. And everything else was to pass the time until we could return to his smiling face.

Sure we've had more tough times since Bryce came home last November. We endured emergency brain surgery, returns to the hospital, a scary Cerebral Palsy diagnosis and hundreds of sleepless nights worried the latest teething jag was actually a shunt malfunction we might be missing.

But we also had the home medical equipment company come take away that annoyingly loud and large oxygen concentrator, along with all of the superfluous tubes and tanks accompanying it. And the NG tubes are long lost history. Thank God. We now have a house full of toys, high chairs, walkers, jumpers, bottles and baby food. We love it.

And then we go to a mom's group or a Gymboree class where all the other baby's are sitting, saying words, eating table food, crawling, walking and using their hands equally. And we can't help it. We don't say anything, we diligently smile through but we both feel it. The sudden realization that our baby isn't normal, that he's so far behind even his adjusted age that it can't be ignored. It's like being kicked in the stomach. We spend so much time with just us and Bryce that we are used to him, he's just another baby. But then we see babies in Vail half Bryce's age toddling around happily while playing with the shooting streams of water and bounding back to their parents with huge grins on their innocent faces. And just like that our bubble is burst.

And we come home to therapy appointments galore... but it's okay because we are so lucky to have Bryce in our lives. We know this.

Then the therapist says we need equipment. We need a stander, maybe a sitter/stander that is a "substantial piece of equipment." Because by 18 months babies need to spend several hours a week standing in order for their growth plates to properly respond, otherwise his legs won't grow long enough for his body and he'll have new issues to contend with. And since he's not going to be standing on his own by 18 months we have to get a $3000 - $4000 piece of equipment to strap him to every day so that he'll bear weight on his legs.

And by the way, we also have to get him a SPIO suit because his body isn't giving enough bio feedback. He forgets sometimes that he has a right arm and he should try to use it. So maybe this compression garment that he'll wear every day will remind him.

Don't get me wrong, I'm happy to have a therapist to inform me of these things. And happy to have the resources to get these things for him. Sometimes though you just want your baby not to need them.

Practice Cake Eating

2010-09-23T10:54:00.000-05:00

Saturday is Bryce's due date/supposed to be first birthday so we're going to have a couple friends over to celebrate. I wanted to do a cake (low sugar, high fruit content of course) because he's a little more of a mature eater now then he was on his actual birthday. We had some left over cornbread from the chili we made this week so Bryce is practicing eat cake this morning with cornbread "iced" in organic banana raspberry oatmeal ;-)

As you can see he is taking this task very seriously...and making a serious mess too!

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Colorado Vacation, Part I

2010-09-20T09:12:00.007-05:00

Our flight arrived in muggy Austin last night at about 11 p.m. and by the time we got the car packed we were covered in sweat for the first time in almost a week. Home sweet home.

We had an amazing time. One that I feel is best expressed through pictures.

_______________________________________

We were more than nervous about how Bryce would handle flying but as he does with most challenges, he smiled and charmed his way through without a hitch. There were tons of babies and little people on this flight, many of them cried some or most of the flight, but Bryce just took these cute pictures.

On our first day out and about we visited Estes Park, which was beautiful and charming.

Caleb enjoyed trying on all of the hats and posing for funny pictures while I found the cutest little "flapjacks" for Bryce. Once I've gotten them washed I'll post a picture of him in them and until then I'll just let your mind wander.

The next day we drove out to Beaver Creek but made a day trip of Mt. Evans, the highest continuous road in the United States. The top five miles are already closed but we drove as high as we could, up to Summit Lake which was one of the scariest and most beautiful places I've ever been.

It was really cold up there but we bundled up and took a walk along the lake, as you can see we all three really enjoyed it!

The view from the top was incredible!

Check back tomorrow for Colorado, Part II

On top of the world!

2010-09-17T16:05:00.000-05:00

We're loving our day in Vail!

The Oktoberfest is happening, the shops are selling the neatest bowls made of old juniper wood, the fall colors are already showing and the gondola ride was gorgeous.

Oh and did I mention the 70 degree, bright and sunny weather. If we can't find a place to buy before Sunday then we'll probably be back Sunday night, ha!
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Moving on...

2010-09-16T10:21:00.001-05:00

We've seen Louisville and Boulder, visited Estes Park and Waterloo and so now we're on the road again. After breakfast we're heading to Mt. Evans, where we hope to see some amazing scenery and big horned goats, on our way to Beaver Creek.

We're excited to kick back at the resort in Beaver Creek/Vail, where "the streets are paved in gold," according to the Insolroll guys, before heading out to our cabin in the "wild West," of Kremmling.

Bryce had some trouble sleeping our first night on the road but he slept soundly through the night last night. He's not all that interested in the scenery but is of course eating up all the adoring attention of the many new friends we're making along the way!

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YUM!

2010-09-14T16:48:00.000-05:00

Yay! Bryce loves asparagus!! Just like his mommy!

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Just Landed

2010-09-14T14:44:00.000-05:00

The Moline family just landed in the mile high city for its first family vacation!

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How Blessed Are We

2010-09-02T12:39:00.005-05:00

It can often be too easy to slip into a pattern of self pity, well at least Bryce pity. Especially on days like these when he's undergone yet another surgery and is enduring yet more pain. But as I silently plead, "why, hasn't he been through enough?" to the universe I'm reminded of how lucky we are to have Bryce with us today.

There is no question that being born four months early, at home without medical care and weighing only 1.5 pounds meant that Bryce's chances of survival were slim. But as you spend your days, weeks and months in the company of other sick babies, life saving doctors, nurses and specialists it's all too easy to expect the most, the best, the miraculous.

The sad truth is though that many of these families eventually go home without their babies. And sometimes it's only after much suffering and valiant fighting that these tiny souls return to their beginnings. We find solace in the belief that they go on, they find peace and comfort. But my heart aches for the parents they leave behind.

Yesterday I prayed for one such tiny preemie, whom I have never met and whose parents I have also never met, but who was introduced to me only yesterday morning by a friend's prayer request. Later in the day I learned that that baby passed away during the night the day before.

Many months ago, when Bryce was fighting for his own life a friend of a friend told her little girl, Hayley, about Bryce's struggle. Hayley herself was very sick and spent many of her days at Dell Children's fighting for her own life. But countless times I was told that she prayed for Bryce often. Hayley passed away on Friday, August 20th and though we never got the chance to meet this special little girl, I will always have a place in my heart for her and her family.

This Saturday there will be a benefit to raise money for Hayley's family to pay off her many remaining medical bills. If you can make it please do, it'll be at the American Legion Hall at 1000 Georgetown Street in Round Rock from 10 a.m. to 10 p.m. tomorrow. There will be family activities and bar-b-que. If you can't make it but would still like to make a donation you can send it to Randy Batten c/o Jeff Uhrig at 519 Virginia Dr, Round Rock TX, 78664.

We are planning to try to stop in and make a donation tomorrow morning, as long as Bryce is feeling up to it.

Post Surgery...eyes

2010-09-01T11:56:00.003-05:00

I wouldn't even consider showing you Bryce's boy business and let's just say you're better off not seeing it anyway as it's pretty awful! But here are some pictures of his after surgery eyes:

You can see the red in the middle corners of his eyes but today being day three I'm surprised by how much better they already look. The first day we came home and he was in a lot of pain he was crying tears of blood while looking up at me pleadingly with these huge, blue bloodshot eyes - let's just say it broke my heart.

We're so used to seeing Bryce's eyes misaligned that we were shocked by how odd we found his correctly aligned eyes. It was an immediate change that we're still getting used to.

He's still not quite himself but I promise he's not as sad as he looks in these pictures. I took these this morning as we were going out for a walk and much as I try to make him like the outdoors he is simply not a fan.

Pre-Surgery Pictures

2010-09-01T10:08:00.002-05:00

Bryce and Daddy waiting for surgery.

A last look at Bryce's misaligned eyes. (If you look closely you can see his two bottom teeth in this picture too. He also has one on the top left and one about to break on the top right.)

Our perpetually happy baby boy with his favorite toy, the octopus pirate.

I'll take some pictures today and post them later so you can see the post-op difference.

Holy Hurt

2010-08-30T14:35:00.002-05:00

My poor Bryce! We'd heard horror stories from our neighbors who have boys about the aftermath of a circumcision and the care and cleaning thereof but nothing could have prepared us for the world of hurt Bryce was in yesterday afternoon.

It was a long day of Bryce crying - not like his usual cry which is actually just a whine, but full on sobbing and staring at me like how could you did you do this to me, which of course means that we were both crying. It was just awful and the only thing we could do was hold him and rock him and try to get him to sleep.

We finally called the doctor's office and his nurse suggested we try Motrin, which seems to me to be some sort of undiscovered miracle drug because we had it right here in the house and it could have saved us hours of misery. At any rate, we eventually got Bryce's pain to a manageable level with a combination of Vicodin and Motrin late yesterday afternoon and just in time for him to go to sleep at his usual 7:30 p.m. bedtime. We woke him a couple of times to give him his medications but otherwise he slept through to 7 this morning.

And now we have our Bryce back - he woke up happy and playful as ever! I'm trying to get him to take a nap right now because I'm scared he's trying to do too much and will end up hurting again.

We're hoping today will be a better day!

On Our Way Home

2010-08-30T11:52:00.002-05:00

We never thought we'd be home for lunch today but Bryce surprised us all, again. His discharge nurse was so impressed with him as he played and kicked his legs despite the epidural numbing his bottom half, she said he never even cried. He's asleep in his car seat now and we're all ready to get home, get some food and crawl back in bed!

Recovery

2010-08-30T10:37:00.001-05:00

Bryce is out of surgery and off the ventilator. I just traded out with Caleb as only one of us is able to be in the recovery room at a time. Once he wakes up a little more and can take a bottle then they'll move him to a post-op room where we can all be with him. The doctors said we'll probably be in that room for a couple of hours and then should be on our way home.

Bryce looks pretty tired and is a little whiny, they said the chordee repair is probably going to be pretty painful when he first pees. It looks absolutely awful and he also has a separate incision where the hernia repair was done.

His poor little eyes (both) are bloodshot and goopy. Apparently it will be 2-3 weeks before the redness goes away and he will have bloody tears for a few days.

Our poor baby went through a lot this morning but we're hoping this will be the last surgery for a very long time.

Once he is out of recovery I'll update on how he is doing.
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Surgery Tomorrow

2010-08-29T21:26:00.002-05:00

Sorry for the late post regarding surgery happening in just a few hours but I think I thought that if I ignored it perhaps it would just go away. Note to self, not an effective coping method.

When Bryce was discharged from the hospital last November we knew that this surgery would be necessary so it comes as no surprise. Bryce was never circumcised (more pressing issues took priority at the time) so that is one of the procedures the urologist will perform tomorrow morning. He'll also be correcting Bryce's chordee - see link for explanation. And last, for urology, they will may be surgically repairing a hyrdrocele - once again, see link.

Bryce also has strabismus and so his optometrist will be doing an eye muscle surgery on at least one of his eyes as well tomorrow. She said that once Bryce is fully under anesthesia she'll be able to freely move his eyes and will decide at that point whether she'll need to correct the muscles on only one eye or both.

We have to get Bryce up super early so we can give him his nebulizer treatments and reflux medicine and be at the hospital at 5:30 a.m. There will likely be a lot of answering medical history questions (again) and waiting, waiting, waiting until sometime around 7 a.m. when the surgery is scheduled.

I was informed that the doctors reserved the OR for 2 hours, 15 minutes so we should hopefully be meeting Bryce in the recovery room sometime during the 9 a.m. hour. I'll probably update the blog via my phone so anyone wanting updates should please check back.

We are on the books for outpatient surgery so we are fully anticipating everything going well, Bryce having no trouble coming right off the ventilator and being home in time for his bedtime at 7:30 p.m. tomorrow night. Of course, my worst fear is that his fragile lungs will make extubating after surgery an issue. But we have been prepping them diligently every day with nebulizer treatments for weeks. And we have the encouraging memory of how quickly and easily he came off the vent after his emergency shunt revision surgery at the end of May.

As always, thanks for taking the time out of your day to check in on us via this blog, to think of us and to say a little prayer for our precious little Bryce.

Too Much Fun

2010-08-26T18:46:00.000-05:00

Can you tell how much Bryce enjoys the swing at our neighborhood park!?

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Pals

2010-08-19T12:10:00.001-05:00

Bryce and Poppa hanging out this morning, it's hard to tell but Bryce's new shirt says, "Grandpa's Little Allstar."

Today they discovered that Bryce thinks being held in the air by his feet and then flopped down onto his tummy is great fun. The way he excitedly kicks his little legs afterward looks like he's saying, "again, again!"

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Messy Eater

2010-08-09T08:42:00.001-05:00

You can always tell how hungry Bryce is and how much he likes whatever you're feeding him by how much of it ends up all over him. Yesterday Abuelita (my mom) was feeding Bryce and he thought it was play time.

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mmmm...Puffs!

2010-08-04T17:57:00.001-05:00

In a bid to overcome Bryce's extraordinary gag reflex we are letting him have Puffs (though they are the all natural white cheddar version). His is a fan, as you can see.

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Bryce's new jumper

2010-07-06T16:46:00.000-05:00

Bryce thinks hopping and spinning in this thing is the coolest thing since sliced bread!
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Bryce's first tortilla...

2010-07-05T15:12:00.001-05:00

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FINALLY WORKING!!!!! Kisses - NEW WITH VIDEO!

2010-06-11T19:06:00.007-05:00

Bryce giving kisses while covered in Cinnamon Apples and Oatmeal.

And the Hits Just Keep Coming

2010-06-08T10:39:00.001-05:00

Bryce was officially diagnosed with Cerebral Palsy this morning.

We always knew he was at an extraordinarily high risk for CP because of his brain bleeds, extreme prematurity and exposure to steroids in the NICU. Doesn't make it any easier though.

This morning was Bryce's one year well visit with the pediatrician. I had prepared myself for the shots, for not being on the growth chart for his age, for not meeting any of the usual milestones. I was not prepared for a CP diagnosis and neurology referral.

It seems so silly and I'm ashamed but it took all the strength I could muster not to break down in tears in that tiny little room. Why? Because every parent wants the best and the most for their children. We are no exception.

Despite the signs and symptoms we've been cautiously watching for months, we were both optimistic that not having been diagnosed yet meant that maybe he'd escape this one.

If I had a penny for every time I've thought, "Really, this too? Hasn't he been through enough already, dammit!?" Well I'd be able to pay for the best doctors in the world.

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Happy Birthday, Bryce

2010-06-07T09:44:00.007-05:00

I can't believe it's been a year.

A year since Bryce's startling entrance into our world. A year since we first stepped foot into the NICU at Dell, a hospital I didn't even know how to get to before that day.

It's emotionally overwhelming to think of how we felt that day.

It's a bittersweet birthday.

We are thrilled beyond words to be able to celebrate Bryce's miraculous life today.

But the day of his birth was the hardest day of my life. I remember so vividly the feeling that Bryce would not, could not make it. That here was my first born child in my hands, so tiny and fragile and fighting for his life. That seconds early he had been safely inside my belly and now he was in our hands. The shock and trauma of a thing like that doesn't just go disappear. Not overnight and not even over a year.

Holding his body in my hands felt literally like holding my heart in my hands. I felt him move and fight for breath, I saw him with my own eyes but it was so impossible. Someone had inexplicably reached within my body, ripped out my heart and here I was holding it in my hands. I felt like I would die if he did. I still do.

Caleb and I drove silently from the hospital here to Dell where Bryce was that next morning. Too scared to speak, too afraid it would all crash down on us if we spoke aloud the fears that were circling around in our heads.

Never in a million years did we imagine we'd be here, a year later, happy and mostly healthy and holding our precious boy whenever we want to.

And we've managed to normalize pretty well. We might check on him an inordinate number of times throughout the night. We might be overly anal about cleaning and sterilizing everything he comes into contact with. We might still spend most of our days with therapists, doctors or nurses.

But we have our baby - he's alive, he's joyful and silly, he's sweet and adorable, he's ours and he's here.

And despite all the trials, all the nights spent crying myself to sleep worried sick over his every breath, all the tough decisions and unknown futures, I wouldn't trade it and I wouldn't change it.

It's Bryce's story, it's our story - it's the story that gave us this miracle.

Here's a recap of Bryce's last year in pictures:

June

July

August

September

October

November

December

January

February

March

April

May

TODAY

Happy Almost Birthday, Bryce

2010-06-06T16:24:00.000-05:00

Abuelita took Bryce shopping for his birthday a little early. Here he is, giving kisses, in his new walker!

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First Haircut

2010-06-04T07:37:00.000-05:00

While waiting in pre-op last week Caleb and I realized that neuro would once again be shaving Bryce's head. So I did what I needed to do in order to have some semblance of control over the situation - I had Caleb get a pair of scissors from the nurse's desk and a plastic bag. Then I snipped it off myself.

He had the cutest little tuft of comb-over you've ever seen growing from his last shunt incision. It was dark like my hair while the rest is light like his Daddy's.

I had to cut it off in an OR waiting room with big red hospital scissors and tuck into yet another Bio-Hazard bag.

I couldn't help but stop for a second to imagine Bryce some day, perhaps at 11 or 12, asking why all of his baby mementos are in clear plastic Bio-Hazard bags.

And par for the course, neuro only shaved half of the comb over off. So now it's partly shaved and partly mommy-hacked. And now Caleb wants me to cut the other "crazy" scar hairs - we'll see.

Oh, Bryce!

2010-05-30T22:20:00.004-05:00

He keeps us on our toes.

Last Wednesday morning Bryce woke up as happy as ever, slept a little more that day but was happy to partake in swim class. He was even the model swim student, showing off to all the big babies who were scared to try floating on their backs while Bryce did it like he'd been sunbathing (HA, have you seen how pale this boy it?!) for years.

That same evening, only a couple of hours later, Bryce awoke from sleep (unusual) with an alarming cry. We tried to appease him, we tried Tylenol but six hours later - at 4:30 a.m. - we were driving back into the familiar Dell parking lot.

It's been months but it's still so odd to be bringing Bryce there and not going there to see him. I wonder if that feeling will ever go away.

As we pulled in I was all at once anxiety ridden and reminiscent. It feels wrong to be reminiscent of such a trying part of my life, but hindsight lets me see that it was also comforting to know he was in a place that could handle an emergency immediately. Unlike home.

Bryce had of course though fallen asleep in the car ride over - either because any car ride immediately renders him sleepy or because he had worn himself out screaming at us for hours. I'm so sorry I didn't immediately rush him in, after an hour of super-grump. But Bryce is such a laid back guy that I guess I figured I was due my fair share of insolent baby.

As we checked in at the ER desk, complaining of an inconsolable baby while holding a perfectly sleeping baby, we were triaged almost immediately because we were lucky enough to arrive during a lull in ER traffic. During triage Bryce woke up, relaxed from his nap I suppose. The nurses all looked at us as if we were crazy but took him to a room because one happened to be available. The ER doc made his way in and noted he just looked like a sleepy baby but since he has the shunt let's do the usual head CT and shunt X-ray series. And so we did.

I last complained about going to the ER because we had realized Bryce would always have to endure these such tests, no matter what was wrong with him, because no doctor wants to be the one who missed a shunt malfunction. Bryce has a broken finger, "Let's check his shunt," I imagine the doctors declaring.

Well, I'm sure glad they checked his shunt because as we were literally packing up to take him home the doctor comes back and says that both ventricles are very enlarged and neurosurgery had already been called, they were on their way. Only minutes later our old friends, the "the Neuro team" were walking back into our lives.

Bryce was immediately scheduled for emergency surgery and at 12 noon I was once again walking out of the surgery unit without my baby. This time I was forced to actually hand him over and then turn and walk away. Why that was harder than leaving him in his isolette with them I don't know, maybe because for so long that isolette was his safe little home.

to be continued...

Birthday Planning Fun!

2010-05-27T06:58:00.000-05:00

Bryce's first birthday is so close it's officially begun showing up as a countdown in my Blackberry calendar, my iCal calendar and my old school leather bound weekly calendar. It's time to get my butt in gear!

In case you don't live near or are just stalking us here is a copy of the invitation so you can see how cute they came out:

Front:

Back:

And that picture up at the top I had printed in little round stickers that I used to seal the envelopes with. I'm having way too much fun, I know!

We've also got a Dr. Seuss pinata, goodie bags for the kiddos and a daunting food preparation list already in the works.

I've you have ANY Dr. Seuss birthday ideas I'm all ears!! hint, hint

Precious Baby

2010-05-26T06:33:00.000-05:00

Bryce has to be the best wake up call ever! I've never been a morning person and 6:45 a.m. might as well be the middle of the night as far as I'm concerned (proof is in the pudding - I'm writing this at 12:23 a.m. while everyone else is quietly settled in for the night).

But when I here Bryce moving and babbling I'm happy to rise and shine.

I'd been wanting to change the pictures above our couch from some I took on our trip to Europe a couple of years ago to some of Bryce. I figured he always makes me smile so what better to take up such large acreage in wall space smack in the middle of our home.

So I took the opportunity to seize on one of Bryce's endlessly happy, ridiculously early mornings last week to try to get something worthy of 12" x 12" prints in ever larger frames, museum matted in the living room.

This is what I captured...

Just try not to love him - I double dog dare ya!

Swim Class

2010-05-24T20:51:00.008-05:00

Today, Monday May 24th, marked a new adventure for our little family - swim class! It's just 30 minutes, four days a week for two weeks but it's still a little daunting. Bryce is both the smallest and the youngest in the class for kiddos from six month old all the way up to three years.

But what he lacks in size and stature he makes up for in tenacity and plain old cuteness!

Here are some picks I took of the two of us just after class. Taking pictures of Bryce in the water just wasn't feasible, since it was just the two of us. This is a beginner class after all.

Bryce is a generally happy go lucky kind of guy but there are two things he just doesn't like: sun and wind. Not a great combination for Texas boy but he's laid back and takes it all in stride.

Our first class wasn't lacking in either department so Bryce compensated by keeping his head down and his eyes closed for the majority of the class. A couple of times I was able to turn his face away from the sun and despite the cold water he not only never fussed or cried but seemed to be hiding a little enjoyment even.

And as soon as class was over he was the happiest baby in the pool (if not the only baby in the pool). He smiled and babbled and tried to eat his towel with the best of 'em.

Wednesday is class number 3 and Daddy's turn to take him. I'm hoping my boys will fair well and bring me home some more pictures to share!

Let's Play a Little Catch ..... Up

2010-05-20T22:23:00.015-05:00

So much has happened it's hard to remember what I haven't been able to write about. I'll do my best but forgive me if pictures tell the majority of the stories.

Bryce took his first trip out of town, he traveled all the way to the Woodlands, TX for a chance to finally meet his great grandma Jeanette. And it's true, she is great.

Bryce enjoying a stroll along the river.

Bryce & Daddy on the riverwalk.

Bryce giving good love (and slobber) to his Great Aunt Linda

Bryce hanging out with G2

The hotel wasn't bad either!

And then Bryce got sick again...yes again. I haven't even attempted to keep up with all the little colds he keeps getting. To be expected I suppose. But still no fun at all.

But then it was finally time for the March for Babies. We are so blessed to have so many come out in support of team BAM! (BAM = Bryce Alexander Moline) but in honor of all babies!

Bryce is growing so quickly and really making strides with his therapy.

We now have a full schedule of therapy each week: Speech Therapy on Mondays at 8:30 a.m., Physical Therapy on Mondays and Wednesdays at about 9:30 a.m. and Occupational Therapy on Fridays at 8 a.m.

Plus I have therapy once a week, on either Monday or Friday. And I work away from home Tuesdays, Wednesdays and Thursdays, two of these days I drive him to Mary's in Dripping Springs and he gets to socialize with another baby. Little Miss Adalyn and he are so adorable together!

But Wednesdays Bryce usually gets to stay home with his daddy, which has really been the best for them both.

Oh, and Bryce sees his pulmonologist once a month though he no longer has to have monthly RSV shots. His pediatrician put him on a nebulizer treatment several times a day to try to keep his lungs clear which means there is another thing that needs to be cleaned and sanitized a million times a day.

But his first birthday is fast approaching so we've also been busy planning a big shin dig for that. All the while in the back of our mind is that the twice yearly neurosurgery check up is in June, as is yet another monthly eye appointment and most likely the pulmonolgy appointment where in which Bryce will be cleared for his urology surgery.

I dread the day, coming soon I know, when I will have to call to "voluntarily" schedule Bryce for surgery. As familiar as we grew to Bryce in the OR it's been a long time now and I'm just as trepidatious as the first time.

I'm grateful that the surgeon gave us the option to choose if he'd have the surgery at their outpatient surgical center or at Dell. For as much as I don't want to check in to Dell for any reason I feel equally safe there.

Since I began writing this much overdue update several days ago even more has happened! Bryce went on another trip where he experienced many "firsts" that I'll be back to tell about very soon - promise!

Played to Sleep

2010-05-13T09:33:00.000-05:00

I left Bryce in his Bumbo long enough to brush my teeth before we left the house and this is how I found him when I returned.

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Pictures from the Walk!?

2010-05-09T21:00:00.002-05:00

Okay, so in the midst of all the hullabaloo yesterday morning I forgot to bring my camera. But many of the amazing team BAM! walkers who came out in support of babies everywhere took pictures for us - thank you!!!

Now send them to us, please!

On a side note, my first mother's day was a hectic one. It started out a little rocky but we hit our groove, like we always do eventually, and ended it quietly with my two sweet boys.

Thank you all for your support yesterday and everyday. I couldn't manage this crazy ride they call motherhood without each and every one of you. I love you.

Happy Mother's Day to all!

What, Where & When for Tomorrow's March for Babies

2010-05-07T18:20:00.003-05:00

Hello team BAM walkers,

I can't believe it but the March for Babies 2010 is TOMORROW! I know everyone probably has questions about where to go, when to be there, etc. so I've tried to include all of the necessary information below. If I left something out please don't hesitate to call, text or email me.

Also, if you are planning to walk tomorrow but haven't registered/signed up as a walker with our team yet please take a minute to do so. You don't have to pay to walk and you can register kids, babies and dogs too. The Austin chapter of the March of Dimes will be allocated certain national funds based on the number of registered walkers we have - so the more the better!
Please go here to register now.

Where do I park? You may park in the Palmer Events Center Garage, One Texas Center Garage, and at the Austin Convention Center. You will want to bring cash to park in the parking garage. It costs $7.00 to park and having exact change will make the lines go faster.
~Attached you will find parking details, directions, a site map, and the route map.~

What time should I get there? I suggest you aim to be at the walk no later than 8:30 am. I know the walk doesn’t start until 9:30am, but we want to allow plenty of time to meet up before the walk. Traffic is likely going to be bad with all the road closures.
~I have attached a schedule of events for the day of the walk.~

Where do I go once I get there? To the Family Teams Tent! Come by the tent before the walk to meet up with team BAM!, take pictures, chat and enjoy the shade.

Where do I get my team BAM t-shirt? Meet me before the walk at the Family Teams Tent and I will have your shirts. Please remember that if you haven't paid for your shirt yet but it did get ordered you will need to bring cash or check (payable to Katrina Moline) for $25 per shirt.
~I have included a list of the t-shirts that were ordered but haven't been paid for yet at the end of this email.~

Do I need to go to the Registration Tent? The only reason that you will need to go to the Registration Tent the day of the walk is to turn in money. I will have everyone's tshirts so only go to the registration tent if you have cash and/or checks you need to turn in. Otherwise, you do not need to stand in line. Instead, join us at the Family Teams Tent and let the kids color before the walk.

What should I wear? We live in Texas so it is probably going to be HOT!!!! The forecast shows partly cloudy with a high of 85°. So dress comfortably in shorts, tennis shoes, hats, sunglasses and don’t forget your sunscreen! There will be water along the walk route to help keep you hydrated, but feel free to bring our own beverages and snacks. Please remember we will walk rain or shine!

Where do I go for the stroller & wagon decorating contest? If you want to compete in the stroller and wagon decorating contest go to the Family Teams Tent after the walk. Phoebe Reed of Stroller Strides will be judging the contest at11:15am. This year’s theme is small feet, BIG hearts! Prizes will be awarded for best theme, most creative, and most spirit. I will have some balloons, etc. on Bryce's stroller as well as extras for team BAM! walkers but we will not be competing. ~Please see the attached flyer for more details on the contest.~

What time is the car raffle drawing? The winner of the Mazda Tribute graciously donated by Austin Area Mazda Dealers will be announced at 12:00pm. The March of Dimes will be selling tickets the day of the walk until 11:30am. They are $20 each or three for $50.

Will there be food and drinks? The Austin chapter of the March of Dimes will be making hotdogs this year. Each walker will receive 1 hotdog. Please note that there are no other meal options, so please feel free to bring your own snacks, meals, and drinks! There will be water available on the walk route as well as under the Family Teams Tent.

Will there be activities for kids? Yes! There will be inflatable bounce houses, clowns making balloons & face painting.

Can I bring my dog? Of course you may bring your four legged family member, but please make sure that they are on a leash, you bring water for them, and pick up after them if they make a mess.

Please do not hesitate to call, text or email if you need anything! I can’t wait to see everyone tomorrow!
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Katrina Moline
team BAM!

Telephone: (512) 293-4445
Email: katrina_moline@yahoo.com

March of Dimes is the champion for babies.

www.marchofdimes.com

T-shirts Not Yet Paid For:

Danny (L)
Jessica (S, 2T, 2T)
Jennifer (12 mo)

I will have these with me tomorrow for pick up - can't wait to see you all in them :-)

Another First

2010-05-06T18:51:00.000-05:00

Bryce's first Unplugged at the Grove, a summertime Thursday night tradition.

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Tshirts have Arrived

2010-05-05T18:30:00.000-05:00

Here's Bryce trying on one of his team BAM tshirts while I try to get organized...

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Cedar Park Emergency Responders

2010-04-15T00:05:00.004-05:00

Where to start?

Let's see, I guess firefighters are always a good place to start, right? Two days ago Bryce and I were on our way home from Tractor Supply (in another feeble attempt to further my ambition of growing home grown, organic foods for Bryce) when we passed the Sonic just outside our neighborhood and I couldn't help but notice the Cedar Park fire truck.

I saw a couple of firemen sitting down eating their early dinner. I hesitated long enough to get to the entrance of our neighborhood but decided hastily to turn around and ask. You see I've been thinking a lot about these guys. The ones that were there, first on site, the night Bryce came so suddenly into our lives. I wanted to do something for them, to thank them for helping give our precious son a fighting chance at life.

So we made a quick u-turn and headed back to the Sonic. I parked up front and awkwardly began trying to explain why I was interrupting their supper. The one I approached was too in shock at my "alleged" story to speak but another sitting quietly eating asked what the situation was and if we were in a bathroom. When I responded appropriately he quickly exclaimed, "That was me!"

Imagine my shock and disbelief. Here I was working on a garden one minute and the next I'm standing face to face with the man who may have aided in saving Bryce's life, not to mention has seen me stark naked. I don't fully understand the whole stark and blue jay, or other bird reference, but I get the jist and it wasn't what I had in mind when I awoke that morning!

The firefighter was unscathed and quickly explained that they had called to check on Bryce and were happy to hear that he had survived until his transfer to Dell but beyond that had had no knowledge of Bryce at all. They literally had no idea if had survived a day, a week or almost a year now.

I was happy to reply, "Well, he's in the car - do you want to see him?" He was more than happy to oblige and spent the next ten minutes oohing and aahing over Bryce. How big he is now and how God must have big plans for him. It warmed my heart beyond imagination, yours or mine, to watch.

We talked quite a bit and I now know their full schedule and location, as well as the EMT's. We're going to take them all a home cooked dinner in the coming weeks and sit down to eat with them. I am so looking forward to not only giving back to them but to them getting to experience a little of Bryce and his miraculousness.

By the way, I'm taking suggestions on a hearty, healthy meal for a firehouse of firefighters and EMTs. hint, hint...comments, please!

The other awesomeness that happened this week is yesterday we got the rare opportunity to sit down at lunch with Danielle and Lisa (two of Bryce's primary nurses, aka pseudo moms, while he was in the hospital) and little Benjamin, Lisa's too-adorable-for-words 1-year-old boy. We were at Chili's for two hours and it seemed like minutes.

It was amazing sitting down and getting to spend some quality time with these amazing ladies. And I can't wait to share it all with you - but it's way past my bed time and Bryce still wakes up every night to eat. So I better do the wise thing and save that special story for another day.

Good night all!

Glasses!

2010-04-09T12:03:00.003-05:00

This is Bryce just after we finally got home last night. Notice how his feet are a little blurry - that's because he's a happy boy and they never stop kicking.

Bryce's world has definitely opened up and he really seems to be loving it. He is using both of his hands more (already) and you can see him quickly focus on things in front of him instead of endlessly searching back and forth for them.

When we walked in yesterday Caleb was standing and I set Bryce, in his car seat, down on the floor. He looked right up at Caleb and smiled the sweetest smile.

His occupational therapist was so impressed this morning though not surprised by how much of a difference the glasses have made. That was really nice.

But of course, now he's figuring out how to get them down from his eyes and into his mouth so that'll be our next challenge. We say, bring it on!

Good News & New Glasses

2010-04-08T22:08:00.002-05:00

Yay for only one surgery! And double yay for if in the near future more than one surgery is needed (still a slight possibility) the two can be done together!

It was a good day. A long one but a good one.

We met with the urologist and now know that the chordee surgery will be done as soon as Bryce's pulmonologist signs off that Bryce is strong enough to go under general anesthesia. We also learned that Bryce's hydro-seal may very well need to be surgically fixed as if it worsens it could lead to emergency hernia surgery or that worse, he could have a part of his intestine get down into the herniated area and get stuck. This is worst case scenario since if that happened, similar to the NEC that we were always so scared of while in the NICU, a portion of his intestine could die.

The doc wrote the order to fix the hydro-seal while in surgery for the chordee but if it magically goes away on its own before that we could still get out of it.

Then we visited the NICU!!! According to some of our old buds, many moms literally will not walk into the NICU, even to say hi, after going home.

I, on the other hand, simply felt like I was walking into my old high school, or the house I grew up in. It's a little distant, a faint picture where the edges are starting to fade to gray, but still powerfully emotional, evoking another time in my life.

It's odd to think of that being another time of my life but after we visited with all the nurses, lactation consultants, nurse practitioners and doctors working the unit today we met Jennifer, one of our old primary nurses, at Chuy's for lunch. The fact that we were meeting for lunch, seeing each other for the first time in months, proved to me how quickly it's all gone by. Sitting there telling her all about how sweet and happy Bryce is. How he's trying to sit up and can bear his weight standing, how he'd roll if he ever got tired of laying on his belly sucking his hand, how he eats and eats and eats until we worry he may actually be eating too much.

My oh my, how are lives have changed completely, then changed completely and once again, almost as if just for the hell of it, changed completely once more.

_______________________________________________

Bryce's ophthalmologist appointment took right at four hours and was excruciating. But he came out with a sample of band-aid-ish patches in camo, blue, boy, boy, and more boy...oh and a pair of the cutest stinking baby glasses you've never, ever even imagined. They are purported to be unbreakable (i.e. plastic) and made in Italy. What else could you ask for, really?

The patch will hopefully help his left eye strengthen, the glasses have already seemed to help him see us from further than arm's length and should also help both of his eyes strengthen. Good, good and more good. Hopefully good enough that surgery will be a moot point before we know it.

So for now, we relish in the joy of a baby boy who sees us coming and wait for the pulmonary appointment to learn of our next micro-preemie adventure.

_____________________________________

Bryce Alexander
Due 9.26.09 - Born 6.7.09 - 24 weeks, 1 day gestation - 4 months early
1.5 pounds, 12"

4/8/10 - 14.5 pounds, 26"

________________________________________

Every day, thousands of babies, just like Bryce, are born too soon, too small and often very sick.

Wouldn't it be an awesome tribute to Bryce's incredible journey to have a huge group walking in his honor on May 8th down at Auditorium Shores, benefiting the March for Babies?

We sure think so! Register here, it's only 3.2 miles and we'll have team BAM t shirts for sale too!

But, if you just can't walk with us, please help by donating to our team (by clicking here), even $1 will help!

♥ The babies would thank you if they could! ♥

Full Day of Doctor Visits

2010-04-06T22:50:00.005-05:00

Tomorrow is a big day for Bryce, though if you saw him you'd have no idea. He doesn't even seem to notice at all.

What a wonderful idea, not to know to be worried or hopeful, or any way at all really. It's like a dog. Everyone loves a dog because each day, each moment for them is new and hopeful, even exciting. Just look at Bosco.

Well, I'm obviously not a dog or a baby (not to mention, I am a mom) so not only do I know, but I must, worry. Though I'm proud to say I'm reserving a bit of energy for my hopefulness too.

Bryce has his urology appointment first. We've known since our NICU days that this appointment would eventually come and that surgery is inevitable. Bryce has never been circumcised, but also he has what is referred to as chordee. Which, of course, will need to be surgically repaired.

After we're going to take advantage of being next door to Dell and stop in at Bryce's old stomping grounds - the Dell NICU - to pay a visit. I'm very much looking forward to this! And then we're having lunch with one of Bryce's primary nurses! Jennifer could single-handedly take credit for Bryce's not needing a ventilator or trach to breathe today and I wouldn't fault her one bit for it. It'll be so much fun to see her reaction to our Mr. Man now!

And then in the afternoon, and likely for the entire afternoon, we'll be at the ophthalmologist. We've been worked in because Bryce's pediatrician is concerned about his crossing. She's worried he may be seeing double, while his PT is worried he only appears to be crossing because his left eye is working overtime to try to make up for a not so great right eye.

Whatever the case, I'm anxious to get in there and see if there is something we can do about his vision. The other day he was standing (assisted of course, though only for balance) on his changing table when Caleb walked in the room. Now everyone knows that Bryce would jump the moon to smile at his daddy but Caleb was testing him. He came in without saying anything and stood right beside me, where Bryce was looking right into my eyes smiling and doing his little balance dance that is the cutest thing ever. Ever.

But he didn't notice Caleb at all. Once Caleb spoke to him, Bryce looked for what seemed like too long but then saw Caleb and grinned that sweet grin from ear to ear.

I hope the eye doctor will say she can do something to help him see but that he doesn't need surgery, a common fix for crossing, from what I understand. I know glasses would be bothersome to Bryce and a hassle but it would be so nice to see him recognize me walking up to him. A bit selfish perhaps, since he has no idea what he's missing.

Words cannot explain my trepidation. All parents worry about surgeries, well all that have the unique misfortune to have a child have surgery. But this takes it to another level.

You see, "the S word" as we refer to surgery in the Moline home, means intubation when a baby is involved. And though this is only hearsay, it is our understanding that baby Grayson is no longer with us because of a lack of oxygen supply during an MRI (while intubated) prior to a surgery. Grayson was given sedation for his pre surgery MRI but never woke up.

I can't bring myself to go into how that makes me feel. It's just too raw still. But as many of our readers are parents themselves I feel confident you can imagine.

So please be thinking of us tomorrow. Our hope is that we'll end the day having learned that there is only one surgery in Bryce's near future, that we can do something non surgical about his crossing and poor eye sight and that we'll have spent some quality time with our old buds from the NICU.

I'll be sure to let you all know more as I know more. Goodnight all.

Much love,
The Moline Family

This Gig Ain't Easy

2010-04-06T22:41:00.003-05:00

You can try to imagine and head the warnings of those that have travelled this way before,
but you still won't be close to understanding how tough this gig is.

Being a parent may very well be the most rewarding job I've ever had,
but it too is the most challenging.

The hours are long.
The struggles are hard.
Sometimes you feel like you're carrying the weight of the team.
The consequences are unimaginable and you often wake suddenly in the middle of the night, startled at their enormity.

But a mere thirty seconds spent in a dim, sweet nursery
rocking that precious, sleeping piece of you
makes it all seem small and petty.

What could be better?

No matter what has come before this moment,
no matter what is to come in the future -
so unknown, so scary, so intimidating -
it is all worth it.

A million times over.

Long Overdue Post

2010-03-31T22:09:00.004-05:00

So much has happened since I last posted I'm not sure where to start or what to include.

Bryce got sick - he got a cough that turned into pneumonia and had to have three medications daily including an inhaled steroid as often as every 2 1/2 hours. But it worked and after a few days he began smiling again. And we didn't have to go back to the hospital this time!

The pulmonologist discontinued Bryce's oxygen (as long as he's healthy) so we no longer have to fight that battle nightly. What a blessing.

I've been feeling pretty crummy too. I'm still not sure if it's severe allergies or Bryce giving me whatever he had since he always finds a way to cough directly into my face. The headache is sharp pains in my temples with a constant tension but the sore throat was the worst and is now thankfully gone. I hope the headache is also on its way out.

The last thing I don't want to talk about but feel a need to is this. We were out as a family on Sunday morning when we ran into the grandmother of one of Bryce's fellow NICU babies. We were shocked and saddened to learn that baby Grayson is no longer with us.

While Grayson's problems were very different from Bryce's we connected with his parents over our sons' trials. I can't get them or Grayson out of my mind. The last time I saw Grayson in person he had returned to the NICU while Bryce was still there for a broncoscopy on the same day that Bryce had his. I stood by his bedside with his parents while he slept of the meds and I completely understood what they were feeling.

Now I have no idea but my heart aches for them.

We are so grateful to have Bryce. We know first hand and all too well how fragile life is. He is such a miracle. Here he is today, smiling as always for his daddy.

Finally Feeling Better

2010-03-22T16:08:00.000-05:00

And lookin' pretty darn cute too!
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Going for a ride

2010-03-11T17:37:00.001-06:00

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Good News!!

2010-03-04T19:49:00.002-06:00

So sorry to just now be updating the blog! We got good news last week from neuro - they had the neurosurgeon review Bryce's MRI and he said that he was very happy with it. We still have our regular follow up in June but if that looks good they very well might not ask to see him again for a year. Their goal has always been to get him in only once a year for regular check ups on the shunt's function.

This week Bryce had his monthly assessment with his physical therapist. She went over the expected motor development milestones for Bryce's corrected age with me. It was quite enlightening. He's doing great on his gross motor skills. Some examples of gross motor skills are: maintains balance while sitting (which Bryce doesn't do yet but is making great progress on), extends arms and legs off surface while laying on stomach and holds head in alignment when tilted from side to side.

On the other hand, his fine motor skills are quite lacking. Though Caleb and I are convinced that he's heard us saying this quite a bit in the last few days and has begun already trying to prove his parents wrong - already. Some examples of fine motor skills are picks up rattle (nope - couldn't care less about said rattle most of the time), grasps and holds cube, engages fingers in mutual touching while lying on back. The last, with the fingers, Bryce has been doing for awhile now but most of the finer motor skills are where he's lacking.

His therapist explained to me that when Bryce first came home the goals for physical therapy (PT) vs. occupational therapy (OT) would have overlapped significantly. But as Bryce grows each will encompass more and more separate tasks. She suggested we get Bryce into OT a couple of times a week to try to get a head start on this.

Of course, with Bryce's history of IVH (brain bleeds), hydrocephalus and possible seizures we expected there would be lots of therapy in his future. And I'm optimistic that with all the therapy we can get him into we'll be able to positively effect his outcome. Whatever an outcome might be.

So if I have to spend every minute of my day waiting for a therapist to call us back, schedule this, that or the other, or calling to pester some home health company into doing their job than I gladly will.

The other recent event, the one we are most excited about, is that Bryce had a visit with the pulmonologist last Friday. He said that they've already seen a huge drop off in flu and RSV for the season so we can start gradually taking Bryce out around people. Hallelujah!

Caleb and I just love and adore Bryce so much and we want to show him to the world! Not to mention we're feeling a little, okay a lot, like old hermits. But as the weather grows sunnier and warmer the risk reduces and Bryce is getting more and more interested in what goes on around him. It's all very exiting!

Not Good News, But Not Bad News

2010-02-23T19:53:00.005-06:00

A couple of weeks ago when we were in the hospital with Bryce the doctors did several tests to check that Bryce's shunt wasn't contributing to his illness. It was a hard realization that day that my poor baby would never have a routine sick visit. No doctor is ever going to want to be the doctor that missed a shunt malfunction. There's just too much at risk. Unfortunately for our poor baby Bryce this means never a reprieve from a shunt xray imaging series, a head CT scan and quite likely a spinal tap.

Like I said, not an easy realization to come to.

But today it may have paid off. The doctors at the hospital let us bring Bryce home only with the understanding that we would follow up with neurosurgery today. And so despite a ridiculous snow storm that went on for hours and hours we ventured out to hear what neuro had to say.

Bryce's head circumference has jumped up 2.5 cm and his spinal tap showed excess amounts of protein in his CSF (cerebral spinal fluid, the fluid of which excess is shunted via his shunt into his stomach cavity to be reabsorbed into his body). The problem with this is that his increased head size could be due to enlarged ventricles. And the extra protein, though not alarmingly high, could be a sign that his shunt will clog again soon.

But neuro couldn't help but see that Bryce looks amazing. There's no denying that sideways grin, the ever moving legs and the constant babbling. This is by no means a cranky baby, which is always the first clue something is truly wrong.

So they decided to review the CT scans from the hospital and compare them to theirs which were taken on our last visit back in December. There was a change noted that is of concern. I suppose that if Bryce were showing signs of not feeling well they would be more worried but since he's obviously happy they have taken the modest road. Which I am ever so grateful for.

So tomorrow Caleb will take Bryce in for a fast acquisition MRI. He had one done at the hospital as part of his discharge orders from neuro so they'll have something to compare it to. And then they said they'd call us in the next few days to let us know what they find.

I simply can't imagine another surgery right now, especially a shunt revision. These procedures may be a definite part of Bryce's life, wether we like it or not, but that doesn't mean I have to attempt to deal with it any sooner than the last possible moment.

So for now I'll simply relish in the joy of a happy baby bath in an unimaginable snow storm in Austin:

Weekend Update

2010-02-21T21:24:00.005-06:00

So much to tell! First of all, Bryce slept last night from 10 p.m. to this morning at 6 a.m.!!!! Holy, wonderful sleep filled night!!

Again, it has to be because he ate, ate and ate some more yesterday. Ending the eating fest with a huge bottle with rice cereal in it too.

And then this morning he had some more rice cereal:

And then this afternoon he had some sweet potato - his first real food:

As you can see, Bryce thoroughly enjoys eating. We are unusually grateful for this because we know from our experience in the NICU that many, if not most, preemies who spend months intubated have feeding issues well beyond the poor sucking muscles. Many have oral aversions, they don't like anything in or near their mouths - which makes eating, even from a bottle, a huge undertaking for them and their amazing parents. And the problem only gets worse as the varied textures of food are introduced.

So we are so proud of our baby Bryce - we may not know what the future holds for our precious boy, but we can certainly relish in the present!

And don't forget to sign up to walk with us in the March for Babies!

Oh!?

2010-02-19T09:08:00.001-06:00

Caleb took this hilarious picture of Bryce and I this morning and I just had to share it with you guys!

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March with Us...PLEASE!

2010-02-12T00:04:00.005-06:00

**You missed it! There was a silly e-card here with my face on a cartoon walking in the March for Babies but I had to take it down for technical reasons so if you didn't get a chance to see it you'll have to keep an eye out for similar new posts...sorry!

But you can still donate or sign up to walk...

Click here to help me reach my goal!

You Gotta Be Kiddin Me

2010-02-11T15:20:00.003-06:00

I'll admit it, I really thought I was going to escape this illness unscathed. No I mean, I really, really thought I would. Naive? Just plain dumb? Optimistic? Yeah, yeah and whatever.

It started yesterday, just as Bryce and Caleb both proved to really be on the mend. A scratchy throat, a body ache and a general feeling of apathy.

Now it's been quite awhile since I've been sick and I credit it to two things: I finally had my tonsils taken out a couple of years ago and should I feel a sickness coming on I take vitamin C like it's going out of style, drink lots of fluids, stay warm and go to bed early. It's like magic I tell ya.

Unless of course you happen to have a baby at home that doesn't sleep through the night. And is still a little grumpy and overly needy due to his still getting over the very same sickness which threatens to ruin your Valentine's Day.

Oy, Valentine's Day. Did I forget to mention we have our first romantic anything since Bryce was born (8 months ago) planned for Saturday night? Yep. Movie tickets bought. Dinner reservations made. Hotel reservations made. Grandma baby sitter booked.

And all I can think of is sleeping through the night.

Sad, I know.

Despite all of my complaining I really am looking forward to it. And I'll be damned if I'm going to let this little bug keep me down for long!

Home Sweet Home part deux

2010-02-08T20:33:00.004-06:00

We are home and so happy to be! We've already had a welcome home, Bryce visit from Poppa too!

Bryce is like a new man today. He's still on the extra oxygen and not eating full blast but the progress is impossible to ignore.

And how nice to come home to this in my inbox...

I barely recognize the baby in the picture and can hardly believe it's Bryce on the very day we began this latest healthcare endeavor with him. Yep, that was the last time I saw my baby boy truly happy - Tuesday, a week ago tomorrow.

Thanks Sweet Mary for the sweet reminder of what we have to look forward to as Bryce continues to improve, as I know he will.

It sure was scary being back in the hospital, especially in the new way in which we don't know exactly what is wrong with him (i.e. he was born to early) and exactly what we need to do for him (keep him going until he can do it for himself).

But we had a secret weapon that I'll be forever grateful for. Thank you all for your continued prayers and support!

2010-02-08T11:33:00.001-06:00

Good news! All tests came back clear, going to try to take Bryce off fluids and go home today! Virus turned into an infection in his lungs but all else is ok!

Preliminary Results

2010-02-08T08:58:00.004-06:00

The preliminary results from the spinal tap show that Bryce has almost no white blood cells in his spinal fluid, this means that an infection is unlikely. This is wonderful news because that would have been about the worst thing I could imagine at this point.

The cultures will take 48 hours to grow, or hopefully not grow, anything. They took a stool, urine, blood and spinal fluid sample to rule out infection pretty much anywhere in the body.

His lungs this morning sound much more junky all over which leads the docs to think he has developed bronchiolitis from the virus he's been fighting. Apparently this is quite common at this time of the year, even in kids who don't have such poor lung tissue.

He also did eat a little last night and was awake more than all of yesterday combined. He's hacking up a lot of stuff this morning which makes him very angry and usually leads to a bit of a desat but otherwise I'm optimistic that he may be turning a corner.

We're keeping our fingers crossed.