A Moline 2012

Where has this year gone?  It's been a wonderful year in the Moline home.  Sure, we've had our fair share of stress and worry but we also expanded to four, had a lot of laughs and celebrated some pretty amazing milestones. 

Here's a little visual recap...

Moline life in 2012.  Make your own photo slideshow at Animoto.

Thanks to everyone who thought of us, prayed for us, read my blog and stood by us throughout 2012.  Here's hoping 2013 is even better, for our family and yours!

Alex's Angel Fund

 I'm so sorry for the time away.  Life with two little ones is nothing short of a circus - wild animals are loose in my house, someone seems to always be screaming, the floors are filthy and we're constantly entertained.  It's getting better as Gage is getting older and we're all getting accustomed to being a family of four.

But that's not why I'm here today.  I'm here to ask for your help.  When Bryce was in the NICU at Dell we were fortunate enough to meet a family who lived just a few miles from us.  Their son Grayson was one of Bryce's NICU mates.  We got to know each other during various times of stressful waiting in the NICU waiting room and over vigorous hand washing at the scrub sink.  We learned that Grayson's dad cooked at his mother's restaraunt in Leander that we had frequently visited and enjoyed.  Grayson went home well before Bryce so when Bryce was finally allowed to leave home one of the first places we took him was to that fabulous little O'Leander Cafe.

But as the years have been good to us and blessed Bryce with the passing of many milestones we never dared hope for, they have been hard and trying to Grayson's sweet family.

Tragically, Gail lost Grayson due to a mistake during a routine hospital stay in 2010.  Grayson's mom, Gail, reached out to me last week and asked me to share the story of Grayson as well as Alex, the baby they were blessed with after losing Grayson.  Alex is now heavily medically dependent and they are having a very hard time making ends meet.

I've known Gail since Bryce's NICU stay and I know asking for help must be incredibly difficult for her.

Please take a moment to read Gail's story:

 "In January 2010 I lost my mother to cancer. This was fast and furious. Seemed like she was just diagnosed and then gone literally 5 weeks later. In March we brought our son Grayson into the hospital for an MRI and G- tube placement surgery. Sadly the hospital made an error and they left Grayson without oxygen long enough to leave him brain dead. Grayson was on life support for one week and then we had to let him go. So, I lost my mother then 2 months later I lost my son.

Now fast forward to January 2011. In January 2011 we were blessed with our third son Alexander. He was an exact copy of Grayson. They looked exactly alike. Alex seemed to be normal - no complications at least. At 3 months he started showing some symptoms similar to Grayson's. We immediately started testing: CT scans of the brain, blood work and eventually an MRI and EEG.

Now with Grayson, we had all kinds of genetic testing and everything came back normal. They said it was not genetic. That is, of course, until Alexanders MRI spectroscopy scan. It was a spitting image of Grayson's - to the T. At that time they said it was a Mitochondrial Metabolic Genetic Disorder. They immediately started Alexander on a vitamin therapy and seizure medications. Problem was that my cobra plan wouldn't cover the vitamins. They were $1,200.00 per month. Then we had to pay $2,200 for the cobra plan. Nine months later we eventually got MDCP medicaid. This helped with nursing and cutting out the cobra expense. They still would not cover the vitamins. The vitamins are extremely necessary. Without them Alex's brain cells would die off one by one. We held our heads high and gave Alex everything he needed. Alex was surprising everyone. He had mastered 2 sets of goals. We had just written his third set of goals to include walking. He was talking and singing all day long. He loved to play and interact and go for walks.

 Now, on September 27th, 2012 we brought Alexander into the hospital for the first time since his diagnoses. He was having cold symptoms. When we arrived at the hospital ER they examined him and did some chest x-rays. His lungs seemed fine but he was working harder than he should have to to breathe. So they went ahead and put him on a c-pap machine. They admitted us and sent us to ICU. This was common, anytime I brought Grayson we would go to ICU as well. 

Alex was still his normal happy self, talking and smiling. We hit the ICU floor at about 11:00 pm. The next morning at around 10:30 am I noticed that Alex needed some suctioning. I alerted the nurse who then alerted the respiratory therapist. The therapist came in and removed the C-Pap which was on 6 liters of oxygen. Then said oh wait I'll be right back in a minute. She still had not suctioned and did not put the c-pap on and left the room. I noticed very quickly that Alex need help he was in trouble. So I alerted the nurse. Alex's oxygen level was dropping fast. The nurse just stared at him. He was blue and at 20%.  I started screaming and ran to the hall for help.  The first nurse I saw looked at me and said "are those numbers for real?" I said yeah duh. So other help came. They were able to bag Alex back up once they finally got a bag. Because no - there was not one by his bed! No code blue was called for this incident. 

So now we're stable and respiratory is back bagging. She tells the other respiratory therapist to go to supply and get him a clean attachment. The therapist comes back but not with the attachment he knew worked. He decided he would try another one. His mistake is that he didn't also bring the one that he knew worked. So he tried the part and it had an 97% air leak. It didn't work. Instead of going to get the part he knew worked he decided he was going to try and make this piece work.

Well it didn't and before you knew it Alex was dead. Flat lined. They were doing CPR. They were able to bring him back and went ahead and ventilated him. Later that day the decided to put in a central line, which took them 5 hours to put in. Well 12 and half hours later, after pumping him full of fluids and medications, they realized that the central line was not in the vein. The ventilator could not ventilate his lungs. There was too much fluid. They had to place an emergency chest tube to drain the fluid.

Devastating to say the least.  The next two days were long. We had to wait 48 hours to have an MRI.

Results came from the MRI: Alex was in bad shape. They said they didn't think he would ever wake up again. Why?  Because the two incidents had wiped out 90% of his brain stem. We were devastated  The thought of never seeing his beautiful eyes open again seemed unimaginable. I'm happy to report the very next day he opened his eyes. What a relief.

In turn though, Alexander has not been able to breathe on his own again. So 2 weeks later we went ahead and did a tracheotomy surgery. He finally came home on September 12th with a trach and ventilator. Its been very rough.

There are many things that we need for the house to make it more adaptable for everyday needs. I have not been able to return to work as of yet. Hoping to start back soon. Christmas is around the corner and the bills are piling up. For instance I have one car payment left on my vehicle and I cant make the payment. They are threatening to pick it up. Our mortgage dilemma has been temporarily fixed. Our first payment for our trail modification is set for DEC 1st. I'm worried about this. I continue to keep the faith and focus on Alexander and our other son Christian, who started high school this year.

I hate asking for help but at this point we have no other choice. IF you can help or know someone who may be able to help please share our link. God granted me the opportunity to care for one of his most special gifts of all. For that I am thankful. God bless.

With Love,
Gail"

You can help this wonderful family in their time of need through the website YouCaring.com, here is the link to their fundraising page:  Alex's Angel Fund

I'll do my best to keep you all updated with Alex's condition as I can.  And I'll be back soon with news on the Moline boys as well.

 

Brothers

We're settling into being a family of four quite nicely these days. It's challenging, no doubt, but as Gage gets bigger and continues to interact more and more with us, it gets more worth any challenges.

One of the things I'm most excited about is for Bryce to have someone to play with. Speaking as an only child, I know how easy it is to get too comfortable being alone or in the company of adults.

I am hopeful that having a brother will afford Bryce not just a playmate and confidant, but also a lifelong friend and role model.

On good days, I allow myself to dream of them being buds, sticking up for each other in school and maybe even raising their children near each other like the big family I always dreamed of for myself. But even if Bryce doesn't some day have a family of his own, I hope I'm able to raise Gage to be the kind of boy, brother and eventually man, that is always there for his brother.

I like to think this is the start of all of those hopes and dreams...their first playful interaction.

Developmental Testing Again

Well we just spent the last 2 hours with a string of therapists testing Bryce. I couldn't be more frustrated or discouraged.

It's just so hard to hear that his gross motor skills are at the level of a 10 month baby and that we should consider augmented communication devices because he may not ever talk as his main way of communicating.

I don't know what I expected and I am so very grateful to just have him here with us. But damn it, sometimes it all just feels so unfair. I rarely allow myself to admit this because where is that going to get us?

I just keep hoping that someday I'll hear him say he loves me. That someday he'll be independent. That someday I won't have to worry about what will happen to him after we're gone.

But 3 years of a therapy schedule that would exhaust an adult and we've achieved 10 months of skills. Really!?!

I would give anything to fix this for him. I have given everything I have to get him here. I'll continue to fight for him, advocate for him, push him and love him until I physically can't any longer.

But I get to be a little frustrated right now, first. Right?

Cleaning House

Finally going through the last of Bryce's medical stuff. I never would have guessed it would be hard to throw away oxygen tubing, nasal cannulas and NG tubes.

Wow, why do I still have NG tubes?? We should have ceremoniously burned all of this in a huge bonfire a year and a half ago!

As confident as I am that we are passed all of those scary breathing issues - I just can't bring myself to not keep a set of emergency supplies.

We'll probably always have an oxygen tank and tubing. And that is ok.

Gage Christopher

I'm happy to report that last Monday afternoon, July 9th at 1:49 p.m., I gave birth to our newest family addition.  Gage Christopher was born weighing 6 pounds, 10 ounces at 18 3/4" long.

It was a truly "normal" birth experience and a short 26 hours later we brought baby Gage home with us.  We're still reeling from the changes, struggling with the usual sleep and breastfeeding issues and trying to accept this blessing as a reality.

It all seems very surreal.  And I don't think that is just the sleep deprivation talking.

The above photo is of Gage one week old.  Here are a couple more to help you get to know our new little guy:

Me & Bryce - I was already in labor when this picture was taken early Monday morning.

Bryce meeting his new little brother for the first time.

Bryce & Gage

Baby Gage already "holding" his paci

Unfortunately, I made it one day shy of full term so I'm officially a repeat offender (multiple preemie babies).  But that's okay because we got 6+ pounds of healthy baby boy to show for it.

Thanks to everyone for all of your love, support and prayers throughout my 36 weeks of pregnancy.  I couldn't have done it without you guys!!

What's Been Going On

Where to start? It's been awhile since I've logged in to post an update, I know, I know. Life is hectic and only about to get even more so. Which honestly doesn't even feel possible most of the time.

Since I was last here I've continued to be pregnant! As a matter of fact, I'm 35 weeks today. Which is a huge milestone and relief for me. It means that the chances of the baby having to ever enter a NICU are greatly diminished. It also means that sooner rather than later, this baby is going to have to make an exit and I can't say I'm all to excited about that endeavor. At least the prize at the end is a good one.

I'll be starting back to weekly OB visits this week, in addition to my last two weekly nurse visits for my 17-P progesterone shots. And in addition to Bryce's 4+ hours of weekly therapy. And in addition to trying to take it easy, working as much as I can while I can and trying to get ready for another person to inhabit our home.

It feels like a mountain climb where I keep pushing and pushing but can't see much progress. It also feels like the lower half of my body belongs to someone else. My legs and hips ache constantly, sleeping is a long, lost memory and at least every other day ends with me shaking my head in shameful disbelief at the state of ridiculous fluid retention in my left foot.

But I'm not complaining.

Okay, I am and for that I sincerely apologize. As a preemie mom who never got the chance to experience these latter pregnancy woes with Bryce, I used to hate to hear women complain about being pregnant. I would wonder, aloud sometimes even, don't they know how much better being pregnant at this point is than the alternative. It's a slippery slope, y'all and I seem to be tumbling down faster than I care to acknowledge.

In Bryce news, things are moving along swimmingly. He has officially qualified for the full ELE program with Leander ISD. His ARD (admission, review and dismissal - for the program) went better than I could ever have hoped.

Although it's against my nature, I confirmed that sometimes you just have to keep asking. Ask again and again, ask in this way and that, maybe ask with a smile and then with a frown. Just don't stop asking until they get so tired of you asking that they bend over backwards to give you what you're asking for. Of course, having a very sweet, supremely cute and legitimately in-need little boy backing you up doesn't hurt.

What I'm saying is, they agreed to offer Bryce speech therapy through the ESY (extended school year - oh the acronyms!) program. This is pretty much unprecedented for a child who is not officially enrolled in the program before the end of the school year. And I do feel triumphant, I do. BUT, this speech therapy is also kind of a joke. It's 30 minutes per week for six out of seven of the summer weeks. They claim it's only a maintenance schedule meant to prevent regression and I say it's better than nothing. And not much different than the max services they offered to provide as part of the ELE program in the fall. Though at least there he also has the opportunity to learn from the other students and the added benefit of a degree holding, experienced, caring teacher who apparently has a great talent in working therapy into every part of their day's routine. Still, Bryce will continue outside therapy as much as is possible.

So, I think that about catches us up. On the horizon, the cerclage will be coming out soon. Maybe this Thursday but probably next Friday. I'm not much looking forward to that. It'll be an in-office procedure done by my OB and apparently there is a good chance I'll go into labor shortly thereafter. The doctor said that sometimes the procedure breaks your water and sometimes the cerclage is the only thing holding things together - figuratively and literally.

So I'm freaking out, trying to go around controlling things I can to make up for having no control over the things I yearn most to have control over. Being a control freak is a lot of work, people - I do not recommend it as a lifestyle choice. C'est la vie.

In an attempt to make up for some of my missed posts here are some pictures from the last month or so:

Here I am about a week ago - 34 weeks very pregnant. 

Here's Bryce hanging out at home a few weeks ago - he's a happy boy!

We took Bryce to the new Play for All Abilities Park in Round Rock and are so grateful to have this place near home.

Bryce was in the musical horses event at his hippo therapy RED Arena riding center RODEO some weeks ago.  He was the first out but the most handsome rider there.

Bryce turned 3!  My baby is now 3 and the party was a great success.  I was worried how much I could pull off being so pregnant and under restrictions but I think it turned out fabulously.  And even more importantly, I think Bryce had a great time.  He seemed to finally get that we were singing to him this year and it was the sweetest thing. 

My mom, step mom and cousin threw me a R.E.A.L. {surprise} baby shower a couple of weekends ago!  Here we all are after the party - it was a great afternoon!

Developmental Assessments - Hard on the Heart

I've just begun blogging over at the new Hand to Hold blog, Preemie Babies 101. Today is my first published post there and it's one that is near an dear to my heart. Please take a second to visit, read my post and check out this valuable new preemie resource.

http://www.preemiebabies101.com/2012/05/coping-with-developmental-assessments/

A Little of This, Little of That

I was way too overwhelmed on Monday (at pick up just as much as at drop off) to take any pictures of Bryce at school. But I made up for it yesterday - here are some pictures of him going into the school with his teacher, on the right, and his vision instructor, on the left.

And here's Bryce realizing that I'm leaving - breaks my heart...

And since that picture from yesterday didn't go so well, I took a video this morning without driving up next to him.  You can see how far he's walking now - it's a pretty good distance just to the doors from the car and he still has to get down the hallway from there.  It's a S.L.O.W. process!

In other news, my dad was tied up at work yesterday afternoon so I got the rare opportunity to take Bryce to hippotherapy and stay with him. For some strange reason my phone's video isn't recording audio but on this video there isn't much to hear. I'm just asking Bryce if he had fun and I think you can tell the answer by the huge smile on his face.

He was pretty wiped out from the four hours at school in the morning with only a 30 nap in the car on the way to therapy but even still you can see how relaxed he looks on Maggie. I can't stop going on and on about how much I think this therapy is helping!



And then after therapy we went out to my dad's so Bryce could take a little nap and I could get some work done. That's when we discovered that some where, some how Bryce has learned to tell people how old he is.

When my dad first showed me I was so shocked I didn't really believe it, thinking it was just a fluke. But we tested him several times last night and then I got it on video this morning. It may seem like a small thing but keep in mind that Bryce doesn't really say any words and the signs that he has are limited (go, eat, more, all done and milk) so this is a pretty big deal to us. Add to that the fact that I have no idea who taught him this - it now seems kind of miraculous.

So without further ado, here is the video (keep in mind, still no audio so you'll just have to imagine that I'm saying to him, "Bryce, how old are you?")

His fine motor skills, even in his left hand, are not great but there is no doubt he's holding up two fingers. And last night while he was sitting in Caleb's lap we were talking and Caleb said "two" in a completely unrelated way, to me, and Bryce did the same thing.

I'm pretty psyched about this new "sign" and excited about the possibility that he may be getting ready to start signing more.  Any additional communication would make our lives so much easier.

Exciting times!!

Overdue Update

April was such a busy month that I've fallen very behind on keeping everyone updated. We had Caleb's birthday and his and Jeremy's annual crawfish boil, then the very next weekend we had a big surprise 60th birthday for my dad. In the midst of all of the partying, I had the initial visit with Leander ISD where they told me that this week would be Bryce's evaluation. That was two weeks ago today - they don't really give you much time to plan considering how busy Bryce's schedule is. Nor is it near enough time to mentally and emotionally prepare for such an endeavor - but then again, maybe there isn't enough time in all of the world.

Bryce is also officially in the toddler room at his day care. This is most certainly a double edged sword. I love that he's getting the exposure to kids closer to his age and it certainly seems to be helping. But they've had some wicked high teacher turn over in that class (it's a tough job) and I worry about the inconsistency. Plus, no one will ever take as good care of him as his Miss Becky, his infant room teacher for the last year, did. Too bad she didn't just move with him!

He's also started trying to walk in his walker from the car to his classroom at day care - which is a pretty good distance. Some days he scoots right along and others he battles me every step of the way. One thing I notice though, is no matter how hard it is to battle the world's most stubborn little boy (trust me, that is NO exaggeration) it sure is easier to have him walking than for this pregnant momma to carry him, his back pack, his walker and his napping blanket.

Over the last week Bryce has gotten really brave and starting letting go of things when he's cruising. I think sometimes he just forgets he doesn't really stand. But I also credit his remarkably improved balance and much stronger core muscles to the hippo-therapy because before he wouldn't have dreamed of it, nor would he sometimes balance for a few seconds before falling. We're trying our darnedest to get him in twice a week before they quit for summer but there haven't been any other openings just yet. I know that one of these days soon he's going to stand and as we continue practicing with the walker he's going to get better and better.

I'm excited to see the changes coming in these next months and hope that they mean he'll be better prepared for whatever Leander ISD deems he needs by the time Fall comes around. With Bryce's birthday only a month away, the new baby coming over summer and him going to school in late August it's going to be a hectic, exciting, challenging couple of months. Better go get my big girl panties.

The Longest 4 Hours of ... Today

I just dropped Bryce off at Knowles Elementary for his first day of a five day evaluation for the Leander ISD Early Learning Environment. He'll be there for 4 hours each day this week to be assessed by their vision, physical, occupational and speech instructors/therapists. This will determine if he qualifies for the program after his 3rd birthday and for how much of it.

I can honestly say it's been years since I've felt so much anxiety over him. Leaving him there this morning broke my heart and took every ounce of courage I have. Not crying in front of him or them may be one of the hardest things I've ever done.

I walked him in, which apparently I wasn't supposed to do (they come out and get them all at once). And in the five minutes I was there he face planted into a bookshelf, danced and cried twice.

I sat out in the parking lot as the first class was picked up by parents and the second was picked up by staff. The smallest kid in either class still towers a full head over Bryce and it was obvious that there were no other students who couldn't walk or talk.

How is it possible that it's a good idea to leave him there? Who's idea was it to send the most challenged to school a full two years before their peers? Why isn't there a special place for these special children?

How will I survive a week of this?

My best inner self just keeps saying survive this week and then you have until August 27th to get him walking proficiently, at least with his walker. In an ideal world he'd also be signing maybe 10 basic words or even talking a few but I'm trying to be realistic.

Those are the hardest parts. How will I know if he hit his head on the playground when no one was watching? He can't tell me that his diaper was never changed or that another kid was mean to him. He can't even open his lunch box by himself and going these four hours without a nap is going to push him to his absolute limit.

I take some solace in the knowledge that he is sweet and cute. Unfair as it is, things in life are often easier for the nicer and better looking. But he may not always have those advantages so I hope he never learns to use them as a crutch but rather finds a way to catch up. There's just so much catching up to do.

And how can we add another person to our already full plate in the midst of all of this? It's not fair to Bryce and it won't be fair to BOTW when he's being constantly lugged here and there for therapy and specialist appointments.

Will I ever get to a point where I'm not overwhelmed with worry?

24 Weeks, 1 day - Again

Today marks the day in my pregnancy with Bryce that he was born. Try not to harp on that one all day.

It was the first thought I had this morning and I have no doubt it will be the last I have as I close my eyes tonight.

Actually, it started a couple of days ago. When I started to feel some relief at the thought that I was finally, really feeling well. Then I remembered how well I felt in the days leading up to Bryce's birth.

And so no relief from the anxiety of what if and what's next could be had in the days leading to today.

This morning my thoughts were of how the morning that Bryce was born, a Sunday morning, I was determined to take it easy and do as little as possible. And I did, even though I truly felt completely fine. Hmmm...I feel completely fine now too. Odd how a thing like feeling fine can even impart a sense of doom under the right conditions.

But this evening I had my sweet boy, laundry and a Caleb cooked spaghetti to keep me about as much distracted as is possible. Even still, as we settle into the evening, and the hours draw closer to 10 - when things went drastically wrong - there is no distraction.

My eye returns to the clock and that traumatic night more and more often. I find myself remembering in shockingly vivid detail what I was doing on that night at 8:00 pm, 8:45 pm, 9:15 pm...

We were driving home and I started to feel badly but didn't want to worry Caleb for what I was sure was nothing.  Growing more concerned over the hour drive home we decided to stop and check my blood pressure (completely normal).  We finally got home and Caleb headed for the couch as I went to the shower. That's where I reached the point of no return, where my gut instinct told me something was terribly wrong as I doubled over in pain.

That feeling of being home with my husband, as so many times before, but being completely alone in my despair and terror. Unable to move and unable or unwilling to scream, I still don't know, I waited until the contraction passed and I could get immediately out of the shower.

The look on Caleb's face when some time around 10:30 pm I told him, "something is wrong."

Him standing next to me, on the phone with the midwife, trying to get me to lay down in bed but I couldn't move. Another contraction, only minutes apart.

Caleb arguing with the midwife about which hospital we should go to when a scream escapes despite my best effort to conceal the horror in my heart for his sake. And then the flood of my water breaking, even the sound of it crashing like a wave against our wood floors. Right there by my side of the bed, where I had naively stood thousands of times before, unaware of just how cruel and hurtful life could be. Without the slightest clue as to how swiftly your while life could change - forever.

And then what? I honestly don't know. A blessing perhaps. Maybe I thought I'd go get dressed and we'd go to the hospital, or that I needed to remove myself from the reality of that puddle. Whatever it was that propelled me to our bathroom, it meant that that would be the site of our first child's birth.

Less than two minutes after my water breaks, I'm sitting in an ever growing pool of my own blood, talking to 911 and helping Caleb give CPR to a 1.5 pound, 12" baby Bryce.

No matter what this evening brings I can only pray it will be much more boring.

And regardless of the trauma of that night, or the anxiety I'll battle for the foreseeable future, I'll be eternally grateful for the miracle I was a part of.

What a wild ride it's been...

 Bryce, at Cedar Park Regional Hospital, about an hour after he was born.

 Bryce - 4 days old, fighting valiantly for his life.

 My first chance to hold Bryce, since his birth, he is two weeks old.

 Bryce finally stabilizing some, though breathing is an ongoing struggle for him.

 Caleb holding Bryce "like a real baby" - aka, no kangaroo/skin to skin but all bundled up where he could stare into his eyes (and the monitors!)

 Finally getting to wear clothes - size Preemie.

 Proud parents (and UT fans) showing off their amazing miracle who is just off the ventilator, after four + long months of not being able to breathe on his own.

 November 4, 2009 - Day 150 and finally leaving the NICU.

 Mere days before Christmas, Bryce gives us his first and our BEST Christmas gift ever - he smiles.

 Enjoying my sweet boy at home in the buff.

 First day of Bryce in glasses - I love that toothless grin.

 The first of many March for Babies, supporting the organization that helped saved our son's life.

 First Birthday!

 First shunt revision after discharge - and last so far!

 First family vacation - high atop Mt. Evans, Colorado.

 First piece of Durable Medical Equipment.

 First NICU reunion.

 Look who can hold his own bottle?!

 And look how can sit all by himself too.

First (and last!) baby brother on the way!