Quiet

...That would certainly be a good description for our house right now. Justin and Kendrick are in North Carolina for the week with Grandma Carolyn, Grandpa O and Uncle Tim. We talk to them a couple times a day, as it fits into their busy schedules. Today we were regaled with stories of the aquarium and the ocean. I believe they are heading back to the ocean tomorrow - better prepared, as today's visit was a bit impromptu I think. I thought they might be a little wary of such an awesome sight as the ocean, but not to worry. I'm not sure Justin remembers his last visit to the ocean - and I know Kendrick won't remember his. I think I am just a little bit bummed to have missed their impressions first-hand, but they filled me in on the phone. I'm just glad they are enjoying themselves in a new environment - and have even put away the slight twinge of not REALLY being missed too much. They don't get a lot of quality time with my parents, so I am thrilled and relieved things seem to be going so well.

As for Gabe, he had his one-year check up today and it couldn't really have gone any better. I filled Dr. Voyles in on the past few months of Riley stuff - mainly the swallow study and feeding issues. He seemed to support us in our stance to remain oral and continue with the cup that works for Gabe - even asking if there had been discussion about removing the feeding tube. We are supposed to discuss that with Developmental Peds in July - we don't see Dr. Rouse again until June 24th, so we'll certainly bring it up then as well. The main reason for all of this confidance in our present course is Gabe's weigh-in today. He is up to 20lbs and 13.5 oz. The really big news is that he did more than maintain his percentile weight, he actually came back up a little!! He is now just shy of 25th percentile! Height maintained around the 50th percentile and we didn't look at head circumference percentile. His big melon was 48.5 cm, so I'll have to go online and see where he is there. Gabe was showing off with big toothy grins (with last week's arrivals, he is up to 5 teeth, still very snaggle-toothed!), patty-cakin and peek-a-booin up a storm.

This afternoon, I was power-washing the fence, trying to get it ready to stain. We should have done it last summer, but we were just a little too busy to get around to it. My mind was definitely wandering during this long and tedious chore. Mostly I wandered back to where we were a year ago. I didn't have to look back through the blog to remember this day. It was not a good day. Everybody had checked out of their hotels and were staying with family in the area. The boys had spent their first night at the RMH with us. I was up early to pump and called the module to see how Gabriel's night had gone. The tone on the phone reminded me too much of that first night - and the vague answers indicating that they were waiting for more information - left me feeling uneasy and anxious to get over to the hospital. Once we were there, the news was not good and there were very few answers. Gabriel just wasn't weaning the way they wanted him to. All of his stats went downhill every time they tried to wean him from ECMO. Even more disturbing was how poorly he was doing with the ECMO settings turned nearly all the way up. There were concerns about seizures, brain bleeds and more worry about his overall respiratory status - we were nearly back where we started. The day was full of tests - EEG, Echocardiogram, x-ray and the decision to get a CT. Who could forget the memorable transport of Gabe on ECMO to the CT scanner - that didn't come until Wednesday. Tuesday night (still the 29th) we asked to stay downstairs in the RMH at Riley. I don't think I left the building all day. Josh walked the boys and Grandma back to the RMH down the street and helped get them settled. I spent my time waiting for his return in the peace chapel. I went to clear my head, to ask for guidance and strength to face whatever we needed to face - I wound up begging. I went back to our little room to wait for Josh, made a couple of phone calls and then went looking for Josh when I thought too much time had passed. I found him where I had just been, in the chapel. We talked a bit, expressing our sense of helplessness - the feeling that Gabriel might be slipping away from us was suffocating. We were exhausted and struggling to hang onto hope. We wanted to be strong for Gabe, ourselves and our families - but this was our time to acknowledge our helplessness and after expressing to God how much we wanted our son with us, we were able to acknowledge that we wanted what was best for him, not for us. We just REALLY wanted those two things to be the same. Now that everyone is depressed - let's remember the rest of the story. Just 48 hours later Gabe would be recovering from surgery, hope restored. I will leave you with video of this morning. Gabe happily playing peek-a-boo.

Beautiful Day

It couldn't have been a more perfect day. It didn't matter that the sun was shining or even that there was a perfect gentle breeze. It didn't matter that the temperature stayed a comfortable mid-70s range all day. It didn't matter for the obvious reasons. But it did feel like a special gift. The perfect weather to match a perfect day. It was a busy, bustling day with details to attend to, but there was a balance to it all. We wanted today to be special and planned those details accordingly, but it would have been a special day without the balloons, cake or decorations. From the moment Gabriel made his appearance, there was a joy present in the entire room. He is a child that radiates joy with his giant, wide-open mouth smiles and infectious giggles. His peek-a-boo grin and bright, inquisitive eyes draw you in. We already knew this, and have done our best to share it with you through this venue over the past year, but it is different in person. It is humbling to see so many respond with sheer joy at the smile of your child. If you are a parent, then you already know that anyone who loves or shows any kind of favor on your child, wins your heart as well. You already know your kids are special and if others can recognize that as well, then they are certainly quite discerning in your book, right? Anyway, I digress, as usual.

I just looked at the time. A year ago Gabriel was newly baptised and fighting for his life as we stood by and watched. We had only gentle touch and earnest, begging prayers to offer him. The nurses took pictures with their camera and ours and I remember as Josh pushed me back down the long hallways from Riley to my room over at IU, I wondered what kind of scrapbook I could make out of a few hours worth of pictures...if that is all we would have. What a strange, almost disconnected and random thought to have at such a time. The brain takes strange journeys during times of stress I suppose. Somehow we did sleep some that night and returned to Gabriel's side a few hours later, thankful we at least seemed to have a little more time. Today I had a 38 page scrapbook to display, mainly chronicling only our time at Riley. There was also another beautiful book on display, that I hadn't planned on. Kaci, together with the rest of the Wittmer clan, had used a site that converts blog sites into books. It was given to us just as the party started and we both humbly and proudly laid it on our donation table. What a year, what a ride. Just four months ago Gabriel's only source of nutrition came from a feeding tube, with only "practice" in the eating realm permitted. He was a champion refluxer and had a lot of ground to make up. Six months ago, he was on oxygen and a monitor, fussed if much of anything went in his mouth, besides a pacifier, was getting "brushed" for desensitization therapy 6-8 times every day, took anti-seizure medication, 3-4 breathing treatments per day, and was barely rolling over. Nine months ago, he was preparing to have a feeding tube surgically inserted, seemed to reflux or spit up nearly as much as he got in his nasal feeding tube, was at high risk for respiratory illness including rapid deterioration or going back on the ventilator if he got the flu. Today we watched him eat almost an entire cupcake and smile through the frosting smeared all over his face. I think that is all I need to say.

On the Eve

It has been a busy week. All the usual applies, but we have also had a kindergarten graduation (TOO cute), last day of school, family in from out-of-town and preprations for the party. Sleep has been on short supply, so I have a goal to keep this short. It's always good to have a goal. I finally finished our Riley Scrapbook this morning, so it will be on display at the party. I had hopes of also displaying his general baby scrapbook, but it is currently only completed through August. I did the Riley book digitally and the baby book is conventional/paper, so the latter may take a while to complete yet. While I have been working on the scrapbook, I have taken many trips back in time. Have you ever been in a crisis type situation, done pretty well considering and then felt like falling apart when it was all over? Sometimes I think I have been on the verge of falling apart - like the cracked vase held together with duct tape. Working on the book, trying to put our story on paper with pictures, remembering the emotions and the roller coaster ride...looking back over the vigil we kept in the hospital and even after we brought him home with dire warnings and predictions of a rough cold and flu season, worrying over every decision and struggling with the responsibility. Most of the time we have stayed positive and just enjoyed where we were, trying to take each day as it comes. It has been the easiest way to stay sane for me. Looking too far ahead seemed too daunting and looking back at times was too difficult. But when I do look back and then try to look too far ahead, sometimes the weight of it all becomes nearly suffocating. So often we hear from people, "I don't know how you do it" and always reply "We just do - do what we can because...well, what else is there? We love our children and we do what we know how to do and try to figure out the rest". That is still true, every word, but in these past weeks of looking back, reflecting, reliving at times...I wonder how we got through it too - and I lived it. Ofcourse I know the answer, the truth of the matter, but I still wonder at it. How did we hold it together? We had our moments, and I have tried to be honest about that. The goal of this has always been to be honest. I won't say I have bared it all, others are better at that than I am, but I have tried to share all that I could to those of you who have stood by us, ached and celebrated with us. We owe you that much.



Tomorrow he will be a year old. It seems unbelievable that a year has passed. As this day has approached, there has been a mixed sense of relief and acknowledgement that it has been a complicated year of joy and tension. Raising children under any circumstance carries tremendous responsibility, that is not a secret. This past year has given us an appreciation of our healthy children and what a miracle they all are, no matter what they bring to our family. It has been a journey through uncharted territory and we navigated as best we could through every obstacle. We haven't been alone on our journey. We may have each had weak moments where we felt alone, frustrated and tired. We know that even those moments we were loved and supported and feeling that way is just part of the journey. We were never alone, and that is the answer. He guided our footsteps and thoughts through a thicket of self-doubt and uncertainty until gradually the thorns were shorn away and the path seemed a bit clearer. He sent us angels on earth to give us what we needed when we needed it most - a patient ear to listen, a handshake or gentle touch at just the right time, a phone call with a voice on the other end bringing peace. Our friends and family have been our glue and we are grateful. I think I'm done. Thanks for listening, as always.

One week

Unbelievably, Gabriel will be a year old in one week. What a year it has been. Ok, I am not going there right now. Too much to say, too many emotions to relive and I am not up for it right now. That and everyone is awake and I don't know how much time I have on the computer. I've been working late most nights trying to get his scrapbook updated to display at the party, so I have been going back through "all the stuff" and emotional baggage anyway. We are working on the last minute details of the party and getting ready for company, along with all of the end of the school-year stuff going on. Life is busy! Oh - we have received some notices from Riley for donations in honor of his birthday - thanks, that is very special to us.

We are pretty much living life with Gabe normally now. Gabe went to Kendrick's end of the year picnic yesterday and also with the whole family to St. Ben's summer social. I had to help work in the children's area most of the time, (the older boys were great helpers) so we are planning to return tonight and just have fun. If you haven't gone, you should go. The chicken dinners in the cafeteria are fantastic - plus there's great carnival food with the rides. I got a quick peek in the silent auction and chinese auction booths, and there is some great stuff in there too. Plus the rain pretty well shut things down Thursday, so we need some help making up for it - GO!!

Gabe still just has three teeth, but is very close to having a whole mouthful I think. He is our snaggle-tooth boy, with only one eye-tooth in on top. We have decided his first word is "uh oh". He says it pretty consistently now - and can actually make both vowel sounds. Still no hands and knees crawling, but he gets around very well anyway. I think I failed to mention that he doesn't really like to be fed that much anymore. He wants to do it all himself, which is fun and pretty messy. The older boys really didn't like to get messy, but Gabe doesn't seem to mind. I am almost out of time, so I'll post some good "messy-eater" shots later.

It is shaping up to be a beautiful day today, so I am anxious to get off the computer and start doing something with it - there is certainly enough to do. Enjoy the day!

Breathing Easier

Today we saw Dr. Macke, down here at the Riley clinic out at Gateway. Gabe is 20 lbs now, which is nice gain in weight, but we didn't gain any percentile points - about the same. He told us about what we would have expected - still something to keep an eye on, but at least good that he didn't continue to drop. Head circumference is still above average and height is around average. (Gabe is standing next to the couch, really working to reach the computer - I'm typing at an odd angle with my legs brace to stop a fall, so forgive typos). Since Gabe is doing so well, it was a pretty uneventful visit. He flirted up a storm with the nurses - showed off all of his tricks, plus one we hadn't seen before. He started patty-caking and then made the rolling-up motion with his arms, which is new. He waved, clapped, blew kisses and smiled his big, wide-open mouthed snaggle-toothed grins. He charmed everyone. I kind of thought after a winter of seclusion, he would be wary of strangers (and he went through a very brief stranger awareness phase) but he doesn't seem to know any at this point.

Everyone is his potential new best friend. In mass on Sunday, he kept swiveling back and forth, smiling and blowing kisses to the young boy in front us while alternately smiling and waving to the people in the pew behind us. Afterwards, several people came up to us, happy to see us together in church as a family. That single hour, in church all together, made it a happy mother's day. Sometimes when you sit down with a baby in tow, you can see the mental groan as the people around you wonder why you aren't sitting in the cry room and also wondering if they will hear anything that goes on. Any time I looked around to see where Gabe was looking, there was someone smiling back at those huge rosey cheeks, smiling at them. Even the older boys were good, which is saying something. When the day was over and the older boys were tucked into bed and actually quiet, Gabe was also scrubbed, freshly diapered and we were settled in the big chair with the empty milk bottle on the side table, his little lashes resting on rosey cheeks with softly parted lips as his breathing changed - letting me know he was asleep - I was struck. Struck by memories that had faded to embers, still glowing, still there, but in the background, not commanding immediate attention. What could this Mother's Day have been like if only... Would I have even wanted to acknowledge it, if things had been different. How does a mother celebrate this day when somebody is missing - I don't know, and I am grateful a glimpse is all I have...a possible feeling of what might've been, just a maybe, but not a reality. That maybe was enough to cause a burning in my eyes and ache in my chest, an urge to squeeze and hold on too tightly to the sleeping child in my arms was carefully resisted. In that moment I said a prayer for the mothers who face not just a holiday with somebody missing, but every day. Not a prayer of understanding - for I know I don't fully get it and couldn't possibly - but a prayer of compassion.

On a lighter note - and to finish where the post began - Dr. Macke said we didn't need to come back until the fall. The winter is over, Gabe is perfectly healthy, and there is nothing more to discuss until another cold and flu season looms before us. So we are breathing easier. We are venturing out and Gabe is enjoying playing outside, going along to the store or out to eat. He smiles at everyone. His brothers enjoy having him along too. It's all so normal, so sweetly normal. We still have feeding issues and weight issues and he is still a little behind in the crawling/walking/pulling up areas, but we are getting there.

Please keep the Fleig's in your prayers. Jackson's patch has slipped and his kidney has moved up. He has surgery on Friday to repair his patch and put the errant kidney back in place. Ellen is a surgical nurse at Riley, so she knows more than is probably comfortable. Too much information is not always comforting when on the other side.

A day for celebration

Today our hearts and minds are elsewhere. We are celebrating two big occasions in spirit. Jack Thomas Hufty turns one today and we are so happy to be a part of it, at least in thought. The Hufty's helped pull us through the most difficult time in our lives. They were with us for the day-to-day NICU life. Our older boys became friends and playmates and we were able to trade-off watching the older boys and spending time in the module. We were even able to share Grandparents and Aunts a time or two. The Hufty's welcomed us into their home and gave us a much needed reprieve from the hospital. When I was alone on the Fourth of July, they invited me to celebrate with them. We have celebrated each other's small and large victories and prayed for each other's heartaches and struggles. We even share a wedding anniversary and alma mater (ISU). Life is funny isn't it. Such trying times and such struggles that in particularly difficut moments can seem full of helpless anguish and frustration...they can still yield unbreakable bonds of hope and faith and friendship.

To quote a song recorded by Gary Allen, "...But the struggle makes you stronger And the changes make you wise And happiness has it's own way of takin' it sweet time[chorus]No, life aint always beautiful Tears will fall sometimes Life aint always beautiful But it's a beautiful ride..."

We are also with Big Justin and Abbi and the families as they celebrate their graduations. What a beautiful day for it...at least I think it is as pretty up there as it is here. It's as if God is smiling too, on such a happy day as this.

It turns out that it is a day to count blessings, to feel the beauty of life and put away the feelings of doubt and despair and worry. We rejoice with them and look forward to the day we can share their joy in person.

The photo is Gabe playing "peek-a-boo"

Another busy week - I looked at Josh and said something to the affect of wouldn't it be nice to just have a normal, routine week. Shortly after that we went over the calendar and soon realized that wouldn't really happen until school starts up again in the fall...
There seems to be something happening every week until August. I think there are a smattering of days here and there that might be quiet or "routine".

Our bathroom is done enough that we started moving back into it again. The tub/shower and sinks are operational, but the toilet can't go in until the floors are done. Josh hasn't taken on tile before, so he is waiting until his schedule and his Dad's allow them to work together on it. I am hopeful that we will have a floor and toilet before we have to plan Justin's graduation party (he "graduates" from kindergarten May 19th, but I was referring to high school). That seems a practical assumption at this point. Speaking of graduations, Kaci's husband (affectionately known as "Big Justin") and his sister graduate from college this weekend. He graduates with his doctorate in physical therapy tonight and his younger sister graduates from IU tomorrow. His poor mother is probably feeling a little overwhelmed about now - so keep all of them in your thoughts and prayers ;) Unfortunately Josh could only get Sunday off from work and we decided that eight hours in the car in one day might be a little too much. The older boys probably would have tolerated it fine, but as active as Gabe is these days, it would have been difficult for him. Especially since we have a neuro appt on Tuesday and he will be stuck in the car for over 6 hours that day. We feel sad to miss the celebration and certainly wish Justin and Abbi all the best. As I listen to the rain on the roof and the grumbling of thunder, I offer a silent prayer that the weather will cooperate with the celebrations that are planned.

I am switching topics completely now. Just wanted to share a quick (hopefully) and funny story. Justin has a magnetic calendar he got two Christmas's ago. Kendrick got one for his fourth birthday. Tuesday Josh was helping both boys switch them over to May and wound up putting some of Justin's numbers on (not because Justin couldn't do it, rather b/c Justin was being too slow) Justin looked at the "help" he got from Dad and muttered something like, "Come on, that's sloppy!" and then promptly redid them. If you know Justin, that won't surprise you.

One last point - again completely switching topics. We are serving chicken with sides at Gabe's party. We need an approximate head acount around May 13th - so if you know you are coming, we'd appreciate it if you'd let us know. If you aren't sure by then, please don't let that keep you from coming. Just let us know when you can, even if it isn't until that morning. We are very excited about this opportunity to thank everyone who has supported and prayed for our family, and especially for Gabe. Hopefully we can also do something for Riley and The Ronald McDonald House, both of which have meant so much to us.

Pictures updated below.