Merry Christmas

I sit here this Christmas morning, surprised to be waiting on two children to wake up. Well, maybe not. Gabe was up for a while last night, and he doesn't quite get the sense of anticipation just yet. Justin WAS up at 5 AM, but we sent him back to bed, and he is still sleeping. So Kendrick is patiently (no really, he is pretty content to wait!) waiting for his brothers to start shredding into the many colored packages around the tree.

Last night, after returning from the Children's Mass, we lit candles on cupcakes and sang Happy Birthday to baby Jesus and go Grandma Maggie - who shares this special birthday. We try to interject the true reason behind the celebration whenever we can, and they do a good job of paying tribute to baby Jesus right along with Santa. When Justin asked how Santa really knew if everyone was being nice or naughty, I told him since Jesus was everywhere, so He tells Santa. That satisfied Justin for now. We can only hope the magic lasts.

Our greatest gift this year is a happy healthy family. Gabriel was discharged from OT this month, just as we thought he would be. This was the last discipline for First Steps we were involved in. It was another bittersweet farewell as we move on in this amazing journey. I talked to the mother of an Autistic child last week and she mentioned that he has therapy several times a week with many different disciplines. It was a reminder that despite Gabriel's tenuous beginning, we are incredibly blessed not only to have him here, but also to see him function as a normal child. He had another echocardiogram this past Monday and we will get another xray next week to continue monitoring his progress and his patch, but we no longer hold our breath in anticipation of these results. We feel comfortable all will show that he continues maintain health and the patch is holding. Some day we know that these results may be different, but we are enjoying today and all that we have to be thankful for. Christ is here in our lives every day and we welcome the opportunity to welcome Him again and again - especially on this holiest of days. We wish God's blessing to you and your families and hope you can feel that same sense of awe and hope that must have been felt that first Christmas by shephards and kings alike.

Merry CHRISTmas!

One more thing

It seems that throughout our journey this past couple of years, there have been plenty of "one more thing" moments. This time it is a definite positive. Karen, our physical therapist, has officially discharged Gabe from PT. The goals we set just about a month ago have been met. Gabe continues to amaze everyone. She evaluated him to be sure he was really ready for discharge and I signed my last physical therapy progress report. As we talked about Gabe and thought back to where we started, I think she was tearing up a little bit, and I swallowed the lump in my throat. We've been so blessed with wonderful and talented people caring for Gabriel even before he was here. Our therapists fit right in. During yesterday's session, we probably did more talking than therapy. She frequently works with Ginger, our OT, and they talk about Gabe all the time. They are both amazed at how quickly this day has come, despite the odds. This is the first DH baby she has worked with who has left First Steps. Typically they still need some therapy beyond age three. What makes it even more amazing is not only how quickly he has achieved his goals, but how quickly he did it with the size and seriousness of his defect. We talked about that too, about where we started. She asked questions about the prenatal timeline and that first week at Riley. I went back to places in my mind I don't visit too often anymore and brought up questions in my own mind I may never have voiced. There are so many unknowns about his development and what happened - both how and why. They are questions that cannot be answered and do no good to revisit, but it's human nature I think. I relayed the shock we felt that first night when we learned Gabe might not survive. I remember the compassion of everyone involved and how they patiently tried to explain the unthinkable. I also remember falling asleep with my head on his bed and then being wheeled back to my own room to get some sleep so we could come back and face a new day and whatever it might bring us. I remember the questions that swirled around in my drug-induced fog of a mind and how they bounced into the events of the day and all we were trying to process. I remember thinking about the countless ultrasounds we'd had over the past months and desperately repeating to myself, "but I saw him practice breathing, how can we be faced with this now".

We talked and relived and in the end just did what we have always done, quieted the questions and enjoyed the moment. As it was the day we were discharged from Riley, it was a bittersweet day. A proud moment tinged with some sadness that we wouldn't see this person every week anymore. Such is life. We will likely go through it again next month as Ginger thinks our next OT session will also be the last one.

I just updated our family blog and the following is Gabe's excerpt of that larger entry, for those of you who are just checking in here. As always feel free to look in on the whole family if you like, sorry if it is a little long winded!

Gabe is coming right along in therapy and is likely to drop next month from OT and PT every week to OT once a MONTH and PT every other week. Amazing. Our most significant accomplishment is probably staying clear of the ER in over a month (knock on head). He has only been to the doctor for a flu shot recently, and last month's check up with Surgery and Pulmonary.

He is babbling more and more, starting to slowly add actual words and now has four consistent signs: more, eat, milk & please. He pretty much walks everywhere, looking very much like a little old man as he goes. This past Friday we made a quick trip to Indy for the members preview of the "Haunted Train" at the Children's museum and then a small reunion with some of the night nurses who took care of him. We haven't had much opportunity to visit with the night nurses, so we were very excited to stop in. Tabatha and Amanda fussed over Gabe's transformation from the last time they had seen him, and the boys' costumes from the party at the museum. As we were preparing to leave, we even ran into Dr. Rouse, who did a double-take seeing little Gabe the lion, accompanied by the Scarecrow and Tin man!! It was cute.

Walking!

Make a Smilebox postcard

During PT this morning, Gabe took about 10 steps!! He would take them 2-3 at a time, then stand a bit, but he took 10 steps before he sat down again. He began standing for extended periods of time just a few days after his last surgery, now the walking! It makes us really wonder how long this hernia had been bothering him and how much it had been slowing him down! Enjoy the video clips - and thanks for all of your prayers and support! We are certainly rejoicing this "big step" - all of them!

There's always SOMEthing...

Do I begin with last night, or Friday night? I guess I'll start with Friday.

I had to work Friday afternoon, so the first part is second-hand. Apparently Gabriel woke up screaming from his nap and didn't settle down easily at all. He then started throwing up and continued alternating between general malaise and vomiting for the rest of the afternoon and into the evening. When I got home from work, Josh and I took turns holding him, eating, feeding other kids, etc... Around 8ish, I went to change his diaper and noticed something different. There was a lump about the size of a large green grape under the skin just to the right of his penis. Well that didn't look right and I called Josh over. We didn't make the obvious conclusion right away, feeling just a little confused after all about something that we hadn't seen before, but as we were sitting on hold with the after hours clinic, Josh stated the obvious and I had a "duh" moment. Hernia - the regular kind. By the time the nurse came on, we pretty well knew we would be heading to the ER, being that it was now nearly 9 on a Friday night. That's where we went and much to our surprise, after explaining the situation, we pulled back the diaper tabs and our jaws dropped when there was no protrusion anymore. They did xrays to make sure there were no intestinal blockages, gave him some pedialyte and once satisfied that the vomiting was over, sent us home with instructions to return to the ER should it pop back out again. The rest of the night and all day Saturday, Gabe was fine. That night, it popped back out again - so I called in the calvary and hopped back over to the ER with the same results. After another couple of hours (Saturday night on a holiday weekend is not a good time to be in the ER) another doctor reconfirmed it had to be a hernia, but to take him home and get in touch with a surgeon Tuesday, when offices were open. He added that if it popped out again and we could massage it back in, we didn't need to come back. Sunday it did come out again, but I massaged the area, the lump seemed to fade away, Gabe was content, so we stayed home. Monday night (sounding like a broken record? I feel like one) Gabe really started to fuss around 7:30, I checked and sure enough, it was back out but he wouldn't tolerate any touching this time. He wouldn't even put his knees down when I picked him up. The ER docs and the on-call surgeon couldn't coax it back in either. So a little after midnight last night they took him into surgery and fixed it. We spent the night in the peds floor and just got home a little while ago. He is sleeping and I think I want to do that too.

NICU reunion

We RSVPd for the NICU reunion picnic at Riley on September 13th. Don't know how many from Riley still check here, but we are excited we will be able to go and look forward to seeing a lot of people who remain special to us there. That's really all I wanted to say, but since I am here, I guess I can update a little. Gabe has completely returned to his normal self, showing no ill-effects from the head-trauma, physically anyway. Psychologically, may be a little different. If he takes any kind of a tumble, he cries - sometimes screams. He can get quite dramatic about it. Hopefully this will improve. We haven't had any other medical appointments in a while, so I don't know if he will have "white coat" syndrome from his stay in the ER and PICU.

We are in the process of getting ready for the big yearly First Steps eval to determine what Gabriel will need in terms of services for the next year. Our OT seems to think that he won't qualify for her services anymore, which is bittersweet. Our weekly sessions are ultimately moving us towards not needing her anymore so it is nice to know we are reaching our goals, but we will miss seeing her every week. Our PT is in the process of trying to get some orthotic foot braces to help Gabe toward walking on his own. He rolls his feet inward when walking and standing, which she says a lot of little ones probably do, they just adjust and grow out of it - and don't necessarily have a PT around to notice a problem. The process is a little slow b/c of paperwork, but hopefully they will be approved. One concern is that we didn't include walking independently as a goal for this 6 month period, since we didn't anticipate needing it as a goal. Standing was one of our goals, so she is hoping that will be good enough to get them through First Steps. If not, we'll buy them. Our Insurance flex acct would probably cover it, but we don't put any money in it. It just seems like an interest-free savings account, so why bother.
Ok - time for bed!

CDH Awareness Petition

Apparently one organization is trying to trademark and have ownership over 'CDH Awareness'. This just seems very wrong to me. If you have a minute, please follow the link, read the information pertaining to a petition designed to stop this from happening. If you agree with the petition, please sign it. Thanks. If you do sign it, feel free to leave a comment or shoot us an email with your thoughts. Again, our email is jpwittmer@wowway.com

Here's the link:
http://www.ipetitions.com/petition/cdhawareness/

Miracle Blizzard Day!!

I just saw the advertisements for this a few days ago, or I would have blogged about it sooner!! Go get a blizzard and enjoy the treat knowing that you have also made an easy donation to the miracle network. It will help hospitals and families, like Riley, who so desperately need it. I don't have to tell most of you what Riley means to us, you know. For those who stumble across this site - I'll try to summarize.

Uncertainty is never easy, but when the question mark sits squarely on your child's life, the fear that comes with the unknown is magnified. I carried Gabriel for nearly nine months and although I couldn't change what had gone wrong in development, I could do my best to care for myself and ergo care for him. While I still carried him, he was safe. When he was born, what little control I had was stripped away. As parentts, you are supposed to know what to do for your child, what soothes them and how to care for them. They don't come with manuals, but you figure most of it out or rely on the advice of others. I couldn't fix this, couldn't even hold him for a minute and tell him it would be ok. He needed immediate care that was beyond anything I knew about and the helplessness was overwhelming. I didn't know what to do, had no answers, but Thank God we were in a place with people who did. They knew what to do when we didn't. Even when they weren't sure what to do next, they never stopped searching for the answers or the next step. Gabriel was exactly where he needed to be and between their hands and God's hands, we have a miracle of our own. He crawls all over the house, makes messes and has a smile that lights up your soul and chases away even the gloomiest of moods. We can't imagine our lives without him and are grateful we don't have to.

So if you happen to pass by a DQ today, swing through the drive-thru or stop in. Order your favorite blizzard or try something new, doesn't matter. Diet or no diet, you can feel good about what you are doing. If you just can't break the diet (or are lactose intolerant) throw a dollar in the jar, most DQ's collect money for the miracle network. If you've followed our story, you are firmly part of our miracle through your thoughts and prayers - think how amazing it would be to be part of a whole network of miracles.

Just like last year, if you get one, leave a comment and let us know what you got!! I'll probably go for the German Chocolate....

Momentous Anniversary

The significance of this date has been on my mind all day. I was a bit emotional when I first arrived at work this morning, but was fortunately able to get a grip! I think the best way to honor this date is to replay "Gabriel's Song", written by Dave Knopsnyder - Josh's uncle. The slideshow includes pictures from birth to his homecoming, so it is fitting. I am going to get emotional again, so I am going to let Dave's beautiful words (from Gabe's point of view) finish for me.

Developmental Peds appt

Yesterday's appt with Dev. Peds was fairly quick and uneventful - which is a GOOD thing! The nurse practitioner was pleased with Gabe's social skills - he smiled and flirted most of the time she was in there. We discussed his milestones and typical eating patterns (I say "typical" b/c the last week hasn't really been typical) which she was also very happy with. After looking at Gabe and checking him over, she was relatively unconcerned about the head trauma incident, simply commenting "it happens" and even related a quick story involving a broken bone with the parents right there. Gabe was certainly much more himself yesterday than he had been all week. Between headaches and upset tummy from his fall and a very stubborn front tooth, he hasn't been his usual, happy and adventurous self. His OT was concerned enough on Wednesday when she saw him that we wound up in the pediatrician's office for some reassurance, especially since we were heading out of town. Our pediatrician checked him over thoroughly and was satisfied Gabe was fine and would hopefully perk up soon. He did and enjoyed a visit in the NICU as well as his first ride on the People Mover. Justin and Kendrick were very excited to finally show their little brother how they spent last summer at Riley. I think they were also excited he could join them this time- ok that "hallmark moment" was more me than than them, but they did comment that it was Gabe's first time.

That afternoon, while Gabe napped and the older boys played with Rex (their new "puppy cousin") Josh got us some new tires. We had a nice blow-out on I-70 at about 9:30 Wednesday on our way up to Indy. Josh had to change the tire, in the dark with semis and other traffic whizzing by while I watched for errant drivers that may pose a threat. I'm not sure exactly what I was going to do if I saw somebody headed for our spot on the side of the interstate, but it felt somewhat useful, so I did it. We now have four new tires and a working flashlight in the van. Live and learn.

rough night

At the moment the older boys are watching 'Finding Nemo', their newly anointed favorite movie, and Gabe is sound asleep. It's a stark contrast to what was going on at this time last night. Let me start by saying everything is ok now. Here's the rest of the story.

Last evening pretty much started out like any other. Josh had just left from his dinner break to go back to work, the boys were all playing in the living room. I looked out the window and noticed the rain had stopped and after checking the radar, determined it might be nice to go for a walk/bike ride in the neighborhood before getting everybody ready for bed. The boys excitedly replied with a "yeah!!" when I asked if they wanted to go and quickly (for them) picked up the toys littered about the room. Justin and Gabe were sitting in the middle of the living room floor and I mentioned to him I was going down the hall to change into some shorts and to let me know if Gabe started getting into anything. A short time later I heard a loud "thud" and Gabe crying. As I walked back into the room, Gabe was lying in his back crying, so I surmised he fell backward and hit his head. The boys were acting a little strangely, but I was more focused on Gabe. I did ask what happened, but didn't get any response (Kendrick did reply that he had nothing to do with it). Gabe wasn't settling down as quickly as he usually did and then he spit up the milk he had just had. That is pretty common for him when he gets worked up, so I didn't think too much about it. I was more concerned that he wasn't settling down and after a few minutes decided that we should head over to the ER and have him checked out. About that time, Gabe went limp in my arms and his eyes rolled back. I'm not ready to relive it all, but at that point I went for the phone and begged for an ambulance. I know the older boys didn't understand what was so different about this bump to the head and were alarmed and confused I was dialing the number they had been taught and coached to call only during emergencies. I couldn't do anything to calm their fears at the moment when it was all I could do to keep my own escalating panic under control. Josh was called, the ambulance arrived and the concern on the EMTs' faces didn't give me the reassurance I was hoping for. Quickly we were all en route to the ER and our early moments there weren't any more comforting. We were constantly having to wake Gabe up and the desire to fall to pieces was edging in closer. Finally he was stabilized and and whisked away to the CT scanner, so Josh and I took the opportunity to go check on the big brothers. As I sat down next to Justin, who has always been very sensitive, my heart broke as he asked, "How much trouble am I in?". At the time I thought he felt responsible solely because I left him and Gabe alone together, but he admitted later to Grandma Maggie that he had picked Gabe up, who had then pitched forward and hit his head. He hadn't fallen backward like I thought, and he was higher off the ground than I initially thought, which explained why things were more serious than I initially thought as well. Guilt and fear make a nasty couple in a parent's mind and heart. Guilt for leaving Gabe alone, even if it wasn't for long, and guilt that Justin felt guilty when he shouldn't.

*Excuse me, just returned from checking Gabe. I am coping with a bit of paranoia - no more monitors in the house - durn it.

Anyway, Gabe returned from the scanner and we soon learned there was bleeding the frontal area and it was clear everyone was worried. Before long we were talking with the surgeon and the ER doctor was paging a neurosurgeon and the pediatric intensivist. Somebody (I don't remember who now) said something about transferring him to Riley - I am hanging on by a thread at this point, Josh is keeping me together and reassuring me as best he can. I am sure he is struggling as well by now. The events at this point are blurred together. At some point one of the male nurses who had gone to check on the older boys and Grandparents came in and informed us that Justin really wanted to see his brother and asked if it would be all right. He went back to get Justin for us, who didn't leave Gabe's side the rest of the time he was there. He talked to all of the staff in the room with Gabriel, asking questions and sharing his own knowledge, acquired from the NICU staff at Riley. He commented on he O2 sats on the monitor any time they changed at all. Fortunately that was always excellent. Even when we left the room to talk to somebody else, Justin stayed right by Gabe's side. Eventually Dr. Cobb, the neurosurgeon was reached and he was able to view the CT from wherever he was. He told the ER doctors that the bleeding wasn't severe enough to warrant a transfer to Riley and that he would be in to talk to us soon. Finally we felt an slight ease in the tension. Eventually Dr. Cobb did come and assured us that the bleeding was minor and Gabe would be fine. He agreed that Gabe should spend the night in the PICU for monitoring, but everything should be ok after that and we didn't even need to see him again unless one of the other doctors thought so. He did mention that the listlessness we observed in Gabe earlier was probably seizures, but this was typical and should resolve without any medical intervention.

We finally made it to a room upstairs and got settled in. Gabe was not happy having his iv messed with and gave the nurses an watchful eye any time they entered the room after that. Unfortunately they didn't want him to eat over night so it was long before tired baby + hungry baby = angry baby. He finally slept from 1-3 AM, but when he woke up at 3, there was no consoling him. Around 4, they brought us an 8 oz bottle, which was gone shortly after that. He fell into a deep sleep and we didn't hear a peep out of him until around 7:30 or 8. I managed to sleep a little in the "extra-comfy" hospital recliner. Things happened pretty quickly the next morning and we were home before lunch time. He has been tired and a little grumpy and clingy today, but all in all, no worse for the wear. It is now about two hours later than when I started typing and he has since awakened, had a little snack and gone back to bed.

This could've been (and for a while appeared to be) a lot worse and once more we are humbled and thankful for where we are tonight. Thanks for your prayers and support once again, and always. Keep praying that we see no more ill effects from this incident. Justin is also fine. We were worried about him for a while too, but he is in good spirits tonight celebrating the loss of his third baby tooth! I am now waiting for him to fall asleep so I can watch for the tooth fairy for him.

Another big step forward

Today I took Gabe for his xray to monitor his diaphragm patch and then we waited to get the cd so we could take it along to his appointment with Dr. Rouse. The news really couldn't be any better. When Dr. Rouse walked into the room, he asked the routine question - how was Gabe? I replied "He's doing great, in fact we haven't used his feeding tube since February 19th". He paused, then smiled and replied, "Are you trying to tell me something?". After the usual exam and review of Gabe's weight (he has gained about 2 lbs since our last appointment, about 3 months ago) and review of the xray, Dr. Rouse agreed that there was nothing to be gained from leaving the button in and out it came! He (Dr. Rouse) told us that tubes left in 6 to 9 months (Gabe's has been in 8 months) usually close completely in about 10 days with no trouble. There is still a chance it won't and we are supposed to call if there is anything leaking from the hole in two weeks. He felt confidant enough it would heal that we aren't scheduled to see him again until late September! We will still get xrays every six months for a while yet, I am not sure how long, but I think for at least the first few years.

We also got the results of the echocardiogram we had last months and apparently it was perfect, just like the xray. Everything seems to be as it should. The inward sternum remains the only significant concern (aside from the obvious monitoring of the patch). After Gabe was undressed and we were waiting for Dr. Rouse, Josh was holding Gabe with his hands under his arms and around his ribcage. He noticed that Gabe's right ribcage seemed to jut out more than the left, or the left is more inward, depending on the correct perspective. Neither of us had noticed this before and we pointed it out to Dr. Rouse. He said it was likely related to the patch and something we would just have to watch. Down the road we may have to face some sort of surgery for that inward sternum, or the patch, but for today we are celebrating another milestone in an already incredible journey. Thanks for continuing to come along. We know you are celebrating with us.

Gabe has really been coming on like Gangbusters developmentally over the past week! He has pulled all the way up to standing on his own and he is also starting to crawl on his hands and needs more. We have to be a little tricky to get it out of him, such as holding something he wants just out of reach while he is on his hands and knees...sounds a little mean, but it works! He is trying more and more kinds of foods and even though he hasn't been weighed in a couple of weeks, we feel like he is continuing to gain appropriately. His personality continues to burst out of him. He is so happy and playful, but has a temper to go along with his gregariousness - that is a word, right?

On the down side we have had a few concerns. He started running a fever on Monday and it has hung around all week. His breathing has been a little faster at times, his poopy diapers have been messy and he has also been a little fussier than usual. The pediatrician's office assured us there has been a GI bug making the rounds and we know he is also teething, so there are two perfectly logical and benign explanations for his symptoms. Unfortunately we can't quite dismiss concerns about his patch and how well it may or may not be holding up. He is due for another xray to check it in a couple of weeks and we see Dr. Rouse on Tuesday. I think on Monday we will ask if we can go ahead and get the xray now so that Dr. Rouse can review it with us during an appointment rather than over the phone, and also to put any unease to rest. There is a lot going this summer and it would be easier to enjoy it all if we know everhthing is as it should be. This morning we noticed quite a bit of drainage from the G-tube site (looked like spit-up, but coming directly from the hole). There has been increased drainage over the past few weeks, but nothing like what we saw this morning. After consulting with the Fleig's by email and the Hufty's by phone, we changed out the button and everything seems better. It seems like it might be a little smallish, which makes sense - we haven't changed sizes from the beginning. We are supposed to order a new button as a spare any time we change out, but we are really hoping that maybe on Tuesday Dr. Rouse will take it out and we will be done with it. We'll update early in the week, when we get more information. Thanks for the continued prayers and support.

Time for Change

Even with the boys in North Carolina with my parents, it has been a busy week. Last weekend we traveled with Gabe to Indianapolis for the ECMO reunion picnic. It was certainly strange to travel with just one child!! During our first week in the NICU - also our time on ECMO - we were pretty self-absorbed and didn't really absorb our surroundings or get to know many people. We would hear stories from our family members who were getting to know others in the NICU, but we couldn't seem to extend beyond our own little world much that first week. As a result, we heard that there were other little-ones starting ECMO, but we didn't know who. Even when Gabe was improving and we were getting to know other families, we didn't meet any other ECMO families even though we knew there were others there. I would imagine they felt much as we did while on ECMO, which just isn't very sociable. We also got the impression that others weren't doing so well as Gabe did. This could be the reason we didn't see any little ones who were on ECMO when Gabe was in the NICU. The next number after his we were able to meet didn't go on ECMO until after we had gone home. We finally got to meet Jackson Fleig, the little boy with the left CDH who is going in for a repair on his patch on June 16th. If you recall, we got to know him through his mother who is a surgical nurse at Riley - and took such wonderful care of Gabriel when he had his G-tube surgery back in September. It was special to meet Jackson, and the whole Fleig family, in person. It is so encouraging to see a family who has already been where you are and see how strong they are and know that we will get there - are getting there. That Friday evening before the picnic we got to have dinner with the Hufty's. We all enjoyed an evening without the kids - which was a first as a group - and even though we had resolved not to talk about kids or medical stuff, we couldn't quite stick to that. Oh well, it is our lives!! On a side note, Indy was hit with some serious storms and even a tornado that passed very close to the Hufty's home. They made it home safely, approximately 3 minutes before the storm hit. When we got back to Kaci and Justins', we saw the radar and felt horrible we had kept them out so late in inclement weather. We called to make sure they got home ok and they were under their stairs! Fortunately they only had minor damage, but did have to stay with family since the power was out and Jack still has a lot of equipment. It was quite a weekend and quite a walk down memory-lane. The day of the picnic was the same date as Gabe's surgery and I found myself looking at the clock frequently and recalling what was happening at that time the year before. It seems strange, but at approximately 2:30, I felt an odd sense of relief. We had just received word that surgery was essentially over, they were cleaning up and the doctors would talk to us shortly before we would go back to see him. I breathed a big sigh and didn't look at the clock for the rest of the day. I know it sounds nuts, it sounds nuts to read back over the last statement. But there you go, I just couldn't help myself. I still wonder if surgery was finished quicker than expected b/c it was "NICU snack time" day and Dr. Little was hoping to make it before it was over at 4. We heard he rarely missed it.

Now that Gabe is a year-old and doing well, we feel that it is time to shift our blogging focus. There is little doubt that the past year has revolved largely around Mr. Gabriel, and with good reason. We have done our best to make sure everyone's needs were met, which we probably failed at all too often, but we have tried. We are not closing Gabe's blog, but we have been informed that it is causing problems with people's computers - primarly b/c of the pictures. Over the next few weeks, we will find a way to condense them down - maybe into a slide show. We are also only going to post updates here specifically related to Gabe's progress for those who are still following how he is doing. For those of who will probably not check too often anymore, or at all, let us tell you how grateful we are for your concern, prayers and support. This blog has been a tremendous outlet during an incredible year and the comments we have received mean more than you will ever know. For those of you who still wish to know what is happening with our family and understand and appreciate how bad we are at keeping everyone informed on an individual basis, we are starting a family blog, which will likely be updated more frequently. I have it set up, but there isn't much on it yet. You can find it at the following address: http://joshpegandboys.blogspot.com

We hope to hear from you there. As always, we love comments and love to hear from you by email as well. Thanks for an incredible year, for all that you have done for us each in your own way. our email is the same: jpwittmer@wowway.com

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.

Quick update

I finally finished the invitation for Gabe's celebration - I did it in the digital scrapbooking software I finally broke down and decided to invest in. I love it - less mess than conventional scrapbooking. I posted a copy to the left, but it really isn't easy to read. If you did not receive an email copy and would like one, email us at the address posted below the invitation and we will send you one. We will send one snail-mail too if preferred - or if you know someone that doesn't email and you think they would like a copy in the mail, we can do that too.

On Thursday, Kendrick had his four year check up with shots for kindergarten - even though he still has pre-k next year. He didn't cry at all. For being such a big boy, we took him to Toys R Us and he picked out the announcer cars from the movie Cars. Still loves that movie!! Gabe was also weighed and managed to pick up 2.5 ounces in the past two weeks. Not huge, but still progress, or at least no decreases.

I am hoping to accomplish a lot today, since we actually don't have anything scheduled - so that is it. Have a great weekend!!

Whirlwind week

It has been an incredibly busy week. Kendrick turned four on Sunday and we celebrated by taking the camper to Harmonie state park for the weekend. Family and friends from school joined us in a very damp and chilly shelter house at the park on Saturday for burgers, dogs and cupcakes. Despite the uncooperative weather, the kids had a good time and the sun managed to squeak out between the rain drops for the last half hour we were there. Gabe came out for Saturday, but that was enough exposure. We thought we might let him stay in the camper one night, but it didn't take but a brief nap time that afternoon to realize neither he nor us were ready for that. He went home with Grandma and Grandpa for the night. Leading up to that weekend, the drywall went into the bathroom, but with the preparations for our weekend excursions and a busy work week, that project went on hold. I took off work Tuesday to paint. I primed Monday night after the boys went to bed, got the first layer on in the morning and the second after the boys went to bed Tuesday night. So the bathroom is painted. Josh picked up the cabinets and countertops this morning. We have the light fixtures and faucets picked out too. The next couple of days will hopefully bring a lot of progress - I am anxious to see if our vision turns out as well as we have hoped. I am also anxious to have the biggest bathroom back in service!

Tonight the boys were both in their first school musical. Preschool sang a couple of adorable songs (nothing I had heard of before) with hand motions on stage and there was a joint production of "Stone Soup" with the kindergarden and first grade classes. It was fun to watch and the boys were so proud of themselves. There is an encore presentation tomorrow which Josh and Grandma will get to enjoy. Grandma stayed home with Gabe and Josh had to work. I also got it on video - so if you would like a copy... (wink!wink!) That more or less sums up the last week. Tomorrow is Kendrick's four year check up and Gabe's biweekly weight check.

Ok - I have been up to midnight the last two nights painting and ironing shirts/pants for the musical, and Friday night was even later decorating cupcakes. I am operating on a bit of a sleep deficit, so don't be too critical of the typos. I'll proofread and post pictures tomorrow, maybe...just don't be too critical. good night all!

It's been a busy week. Nothing out of the ordinary, just life as usual - which is usually busy. Gabe and I have been battling colds, so neither of us have gotten a lot of sleep the past several days. And since Josh is home at night now, neither is he. Mine might be allergies, which I have been denying I have for years. Gabe is also doing phenomonally well eating - still taking over 24 oz per day from his cup! The down side of this is that he wakes up to eat at night more like a two month old! At least once per night and sometimes twice. It's difficult to complain about the lack of sleep when he is doing so well orally, and really making tracks around the house. Justin promised to watch Gabe for me while I brushed Kendrick's teeth and when I got back - approximately two minutes later - Justin had coaxed Gabe all the way across the living room and into the entryway by dangling a ball Gabe wanted in front of him. It's the farthest we've seen him go at once, and Justin was giggling with glee and pride that he had something to do with it. It made me smile. Gabe probably would have kept going down the hall like Justin wanted him to, but he became fascinated with the rug in the entryway. All too soon it was time for bedtime stories. I say all too soon not because there wasn't part of me that was really ready for them to go to bed so I could finish up some things and head to bed myself - that would be untrue! I say it mainly because dinnertime was a yo-yo of Justin's up and down moods, which happens from time to time, and it was nice to see that the evening was going to end on a high. Both older boys were very tired and moody actually. It was just fun to watch all three of them smiling and laughing over Gabe's accomplishments.

Speaking of which, Friday was Gabe's weight check. He weighed-in at 19 lbs and 5 oz. So, he made a nice gain in weight, but I am not sure there was much of a gain in percentile. That's ok. I think there isn't really an issue with his current percentile ranking, just that it shouldn't drop anymore. Ginger (OT) continues to give us tips for "fattening him up", with the caution that too much weight gain will interfere with all of his newfound mobility. It is such a balancing act, isn't it? Well, we are no strangers to balancing acts! We all do it every day. I think we are in a good place and balancing as well as we can. There is still the shadow in the corner of the mind, the knowledge that things can change and the balance shift...but for now we are enjoying where we are. Sometimes I struggle to live in the present, so this has been an excellent excercise in doing just that. Each new moment brings new experiences. An exhausting round of tantrums can still yield a happy evening of giggling boys...

O Lord my God, When I in awesome wonder,Consider all the worlds Thy Hands have made;I see the stars, I hear the rolling thunder,Thy power throughout the universe displayed.
Then sings my soul, My Saviour God, to Thee,How great Thou art, How great Thou art.Then sings my soul, My Saviour God, to Thee,How great Thou art, How great Thou art!
When through the woods, and forest glades I wander,And hear the birds sing sweetly in the trees.When I look down, from lofty mountain grandeurAnd see the brook, and feel the gentle breeze.

Seeing the boys experience spring in its earliest blooming, such words and melody resonate with me. Such moments grab a parents' heart and give it a little squeeze. I love when the daffodils bloom - partly because they are first to welcome spring, along with the crocus. When the daffodils bloom, spring is officially here. There is also something about the sunny yellow blooms that lift the spirits and bring happy thoughts of warm breezes and early spring jackets - heavy coats are thrown aside and the oppressive heat of summer is still far off.

Yesterday we were able to get out and walk after dinner before getting everyone ready for bed. It felt so normal, so free! A neighbor out walking stopped to chat and fussed over all of the boys, especially Gabe, as babies usually attract the most "fuss". She didn't know his history and even though we don't mind sharing, it was also nice just to be the family down the street with the baby in the stroller, like any other.

Gabe is now starting to figure out how to dig in his knees and feet to get around. He doesn't like dragging the G-tube, as he would in the more typical "commando crawl", so he has figured out an interesting way to shift his torso and hips while using his arms, hands, feet and knees to get around. I started yesterday and he is already perfecting his technique. I think he is literally going to 'take off' from here. Even as we clap our hands excitedly and cheer him on, there is a little inward sigh thinking of all that has to be moved up a level to keep it out of reach. We have been preaching to the older boys about keeping their stuff picked up and out of reach for Gabe's safety, now those efforts will be redoubled. Here we go - we have a budding crawler in the house again! I remember the first time Kendrick really took off and we didn't realize he was as good at crawling as he actually was. We went looking for him and found him in the bathroom pulling all of the wipes out of the cannister. We had a good laugh and heaved a sigh of relief that was all he had gotten into. It also made for a good picture. The wipes are currently in the living room, so that one may be recreated without a trip down the hall.

I have two more stories to share, and then i am done for today. First: We received an email and photo from nurse Laura - she delivered a beautiful and healthy baby boy. Over 7 lbs and absolutely beautiful. They named him Jackson Oliver - congrats to Laura, Bob and little Jack. Second: back in the fall we read an obituary for baby Colin from Evansville, born in mid-June. He had died from a heart condition at Riley and we were just sure it was the baby boy of one of the families we had gotten know at Riley. We couldn't remember his last name and the obituary had very few details, aside from what I already posted. I kept thinking it couldn't be him as he had been doing so well the last time I ran into his Dad in the grocery store parking lot, but the facts sure seemed to line up. Today I ran into Colin, Mom and Dad in Target and can't remember the last time I was so happy to see anybody. He had repeat surgery to repair the two holes in his heart back in December and is doing fantastic. He looked great, as did his parents. I told them about the obituary and how happy I was to see them. It doesn't change the fact that another family lost their son, but for a moment I selfishly felt joy and relief for the family we knew. Ok - it is past my bedtime. I have more pictures to post below, but please be patient and give me a day or two. For those of you who print some of the pictures, I will post the two included in this post down below as well.

A little change

I read the last post again and decided to change the title. It was very late and I was very tired and was in a hurry to get a long post going so I could get to bed. I had just checked email before posting and was intrigued and excited that there was such a thing as CDH awareness day - so I typed a title for the post in a hurry in my excitement over the awareness idea, not the defect. In reflection, "Happy CDH Day" just doesn't sound right. It isn't as if we celebrate Gabe's defect as an ethnic difference, that just misses the point. We celebrate his life and our journey together and what that journey has brought us. We don't celebrate the defect itself. We celebrate the wonder and miracle of the human body and how God's hand has healed us along with Gabriel. We don't believe or accept that God made Gabriel or any of us to suffer or that this little change in development which had such far reaching affects was the blessing - that came later. We believe He was able to use a difficult time and painful experience for good. We celebrate what has come to us, not necessarily how it came to us. We celebrate the awareness of something we had never heard of before Gabriel - maybe awareness of this defect will help researchers figure out how it happens. As a mother responsible for growing a life inside of you - it is difficult not to wonder if I did something or ate something at just the wrong time and it allowed for this flaw in development. Is there some tiny gene that we passed along? Research has linked up folic acid and spinal chord development - so is there some supplement that can help prevent cdh? Some food or chemical that is ingested? Nobody knows. It's just one of those things and I realize that dwelling on the cause doesn't help anybody - not me, not Gabe. But I wonder sometimes, sometimes in those quiet moments by myself, or watching my children sleep. A tiny "why?" whispers on the edge of my consciousness. Awareness is a good thing, or can be if handled for the betterment of all. I didn't ask why for a long time, couldn't face the possibility that I could have done something to cause Gabe's suffering, or even end his life. But as time goes by, as he gets stronger and we all get stronger - I think the voice gets a little louder because if someday that little, single word question could have an answer, then there would be fewer babies born with such a battle to fight. Or even if the "why" isn't answered, there is the question of what now? It has been said that many learned valuable lessons from Gabe and those lessons may save lives. If that is true and even one baby is saved from death, even if not from the struggle, then there is greater purpose in all of this. We were incredibly fortunate and blessed to be put into capable hands who could do what most hospitals could not do. Maybe awareness would bring lifesaving research and lifesaving technology to more hospitals and more babies. Last Thursday we were in the pool area at the hotel, letting the boys have some fun - and wearing themselves out completely. I was sitting in a chair with Gabe, who was in a swim diaper with his Gtube and scar revealed. A woman who was admiring Gabe's smiles and excited arm waving at his brothers came over and noticed the tube and scar. She begged my pardon and asked if I minded telling her about Gabe. (I know, you feel for her already). I shared the highlights and she amazed me by telling me of a friend of a friend who had a baby in Florida with a left DH, which is the most common and often more severe and more complicated. The baby's defect was so severe nearly all of the abdominal organs were up in the chest cavity and it was determined that surgery on the fetus was the only option, or all would be lost. They didn't believe this child would even survive to delivery without surgery. From what I have read online (so I am not professing to be the expert) - this is extremely unusual, most are carried to term, delivered and then assessed. The child is now 2 or 3 years old. Amazing.

So it was not the CDH I was expressing my happiness for, but the awareness and what that awareness could bring.

Congenital Diaphragmatic Hernia Awareness Day

I received an email from Becky Hufty about Congenital Diaphragmatic Hernia Awareness Day, which was today. She also sent the ribbon. I have seen the ribbon before. When I initially googled diaphragmatic hernia, it seemed that the information I found wasn't what I was looking for. I also couldn't absorb too much in the beginning and didn't look too hard or want to filter through all of the links and websites. Last month, for some reason, I decided to google "congenital diaphragmatic hernia" and everything I found was naturally much more pertinent for us. I also found a site all about awareness and the ribbon was there. It is basically a support site for families of CDH babies. I keep intending to go back and look around some more, and possibly join. I just haven't quite gotten around to it. I'm not sure why I haven't made this a priority. We have so much support, but it isn't like you can't have enough. We have met a handful of other families and the Fleig family is an unwavering source of "been there, done that" support. I want to make contact with other families in a more global sense - so why haven't I? I guess we are still just so in it right now...maybe that's enough for today. I don't know.

Ok, so I haven't taken the time to blog about our appointment at Riley on Thursday. It has been a busy week and weekend. The boys enjoyed their spring break, but by the end of an entire week of bopping here and there, messed up routines - they were tired and so were we. Today it was back to school and back to routine. We are now also really into project bathroom - Josh and his Dad did the major demo yesterday. Our bathroom is currently stud walls and wood slatted floor. The boys enjoy peaking through the slats in the floor to the basement. On the up side, they are burning a lot of energy taking turns running up and down the stairs to yell at each other through the bathroom floor/basement ceiling. Anyway, these are the reasons for the delay. Here is the summary: We expected some concern and worry over his weight, but there was none. They seemed perfectly satisfied with his growth thus far and marveled over all of his accomplishments and were pleased with the therapy Gabe is receiving and how it is helping him. So we felt pretty good about this and were not really concerned about the swallow study, to be completed a little later that day. Dr. Stanley - the dev. pediatrician - would meet us there. During our downtime, we shared a wrap at the patio and let Gabe suck on the pickle. He thoroughly enjoyed it, especially since he was very hungry - awaiting the start of the swallow study. By the time the study started, poor Gabe had missed a nap so we could now add tired to the hunger. If you know anything at all about babies, then you know this is not a good combination for the most good natured of little ones. He was unhappy, but handling it all ok until he saw the cup and the shaking of the formula. The pacifier popped out of his mouth and he started making the little urgent noises he likes to make when he is very hungry and he wants you to hurry up. Unfortunately, there were delays in experimentation with different cups and consistencies. He would be given the cup, then it would be taken away to try something else, then he'd get it back, then it would be taken away again. Not good. Not good at all. On top of the fatigue and empty belly, he was sitting straight up and strapped into a seat with all of the equipment needed to watch him swallow the barium (so he also had chalk in his milk). It was a wonder they got any information at all. Here is what we discussed after: She stated that she did not see any specific aspiration, but she was very concerned about Gabe having his head back (hyperextended) while drinking from the sipper cup - it looked risky for aspiration and she didn't feel comfortable giving us 100% assurance that he was not aspirating or would not aspirate with the cup. They also tried a straw cup, which she thought looked better. They also tried the cup and thickened milk. We could tell she was a bit uncomfortable with Gabe drinking from the cup, or probably even the straw cup, but didn't want to tell us we should go back to using the tube more exclusively when we haven't used it in over a month - and very little for over two months. Her suggestions were to thicken milk in the sipper cup and really push towards getting him to use the straw cup. When we had a chance to process all of this, here were our thoughts - at home when he drinks from the cup he is held in a more reclined position and his chin is down, meaning his head and neck are not hyperextended. He is also not usually between screaming fits. I guess we just didn't have a lot of confidance in the reliability of the test in showing what is happening in our daily life. Dr. Stanley also mentioned that one reason Gabe may not be taking 8 ounces at one time like a more normal 10 month old could be that he feels unsafe and gets fatigued. We won't argue that he may be getting fatigued - we know he still breathes faster than what is normal for other babies and the whole "suck, swallow, breathe" coordination is different for him. I could see that for the little I was able to observe. It looked to me that he would "suck, suck, then swallow, then breathe". It seems that he is finding a way to make it all work - and over the past 8 days (according to our log) he has increased how much he takes at one feeding and how much he takes overall. He typically takes 20+ ounces per day now.

We also discussed ways to keep his calories up - and she agreed with everything our OT was having us try thus far. She even mentioned that we could mix in some butter to up his calories. I didn't expect to hear that. We'll have to see if Paula Dean has a cookbook for babyfood. That ought to take care of all of our calorie concerns. Dr. Stanley agreed with Dr. Rouse that we should probably get weight checks every two weeks to continue monitoring Gabe's weight/growth. She also wanted to up his fluid intake a little more and suggested that if he gets less than 28 ounces of fluid per day (we can count some fruits and veggies to a degree) we should maybe put some water down the feeding tube to keep him hydrated - without worrying about filling him up and interfering with his hunger and desire to eat. Then she mentioned something we did not expect to hear. She said if everything was going well n July when we return to see her - meaning he is eating and drinking like a normal 14 month old, we could discuss when the tube should come out. I really thought it wouldn't even be discussed until after the next cold and flu season, which could still be our reality. We will just have to see how the next few months progress - see what Gabe does! She also mentioned that if Gabe didn't seem to be eating a variety of foods and calories were still a concern, we should probably delay switching to milk after his birthday and sticking with formula a little longer. I kind of expected that. I think that is it. I hope I got it all. It is late and I haven't proofread this, so forgive the typos please!

Well, it has certainly been a busy couple of days. I don't even know where to start and I am really tired. Easter was such a nice day. The boys were so handsome and everyone had a nice day together. I will get more pictures posted tomorrow, so check back. Monday was Josh's promotion ceremony. We were so proud of him - and all of us were there to support him, even Gabe. There was a nice crowd there, but nothing that made us uncomfortable about Gabe coming along. Lots of people got to meet him in person for the first time and we enjoyed showing off all three boys for a change. It was still Josh's moment, but Gabe shared the spotlight a little. Gabe even shook hands with the Chief of Police. Since it is spring break week down here, Josh's sister Brooke was even able to come along with their parents. Kaci and Justin were down for Easter, but their spring break isn't until next week, so unfortunately they could not stay for the promotion ceremony, but we had a nice time with them Saturday and Sunday. After the promotion ceremony, we went to lunch downtown at Max and Irma's at around 10:30. At that time we pretty much had the place to ourselves, so we were even able to relax and enjoy a restaurant without worry. It was all so normal and we loved it.

Today was a follow up with Dr. Rouse. He was pleased and surprised to hear Gabe hadn't used his tube for feeding in a month. We updated him on all of Gabe's accomplishments since our last appointment in January and Dr. Rouse told us that seeing Gabe and hearing all that has happened made his day. Gabe smiled and chattered away at Dr. Rouse while he was being examined. He has been a little more leery at medical appointments lately, so I sort of expected him to cry during the exam but he didn't. It's as if he knows this man is particularly special. He also noted the drop in the weight percentile but agreed that we could continue as we are with regular weight checks to monitor his progress closely. He did add that if his weight became more of a concern, we should add a feeding at night to up the calories. We expected that, but are glad he agrees we can continue as we are for now. Gabe has consistently taken over 20 ounces in a 24 hour period for a week now, which is a big improvement for him. During the exam, Dr. Rouse noted that Gabe's sternum is a little inward (I really can't remember the medical term for this, if anyone reading knows, please email us or leave a comment - I meant to google it) which he says can happen with DH kids. It doesn't overly concern him for now, but if it gets worse then surgery may be required to fix it. Fortunately we won't need to address that until Gabe is 8-10 years old, so there is plenty of time to watch, wait and see. Dr. Rouse also ran his fingers over the veins across Gabe's upper torso and neck, which are quite pronounced and have been for months. We have all noticed and the therapists have commented on it, but since multiple doctors examine him, see them and haven't said much, we haven't really asked. Today I did. He told us sometimes it happens after ECMO and is just something else we will have to watch. He recommended a repeat echocardiogram just before our next appointment with him at the end of May. We have talked about repeating this around Gabe's birthday before, so this was not a surprise. Aside from weight checks, April should be pretty quiet medically. May on the other hand will have some sort of appointment every week. We'll enjoy the reprieve and then look forward to more good news (fingers crossed, prayers offered) on Gabe's progress in May.

Good Friday

Gabe had his weight check today and final RSV shot! He was not happy about the shot, ofcourse, but the word final has double meaning and double reason for some relief. First that it is one less thing we need to do and second, RSV season is coming to an end soon - there is light at the end of the tunnel. The weight check was good enough to show that Gabe is maintaining and not losing ground as he appeared to be three weeks ago. He weighed in at 18 lbs and 11.5 oz. I looked to see how much he weighed three weeks ago and it showed Gabe had gained exactly 1 lb. It is a good gain, but we didn't really gain anything in the percentile area. Our pediatrician seemed encouraged and satisfied with this for now. Since we are seeing Riley docs next week (Dr. Rouse in pediatric surgery and Dr. Stanley in Dev. Peds), next month (Dr. Macke in pulmonology) and again in early May (neuro at Riley), we will be getting weighed frequently enough to monitor this progress. The next two appointments are with docs who haven't seen Gabe in a while and I do think they will be amazed and happy with all that he has accomplished since their last visits, but I also wonder how they will react to his drop in the weight percentile. He is making so much progress and I hope we won't be asked to use the tube more, since he is doing so well orally. He even wakes up sometimes when he is hungry now. On the one hand, we do have the tube and we could put more down the tube at night, especially after he has gone to bed and before we go to bed. It would spare us getting up later if he falls asleep a little too early and maybe didn't take enough at bedtime. But as tiring as it is to get up and feed him if he awakens, hungry and crying, just a couple of hours later, I think I'd rather do that. It's normal. It's what babies do, especially during growth spurts. It can make the next day a little more challenging, being tired, but I still think I prefer the normal way. We've worked so hard to get away from using the feeding tube, to eating normally. Tonight at dinner I tried something different and was rewarded. Instead of green beans in the mesh feeder, I cut them into little bits and placed them on the tray. He picked them up in his little fist and did his best to cram the mashed up remains into his mouth, just as I had hoped he would. It was really just a couple of weeks ago that foods had to be pureed very thoroughly for him to accept them without gagging or rejecting them. Tonight he ate a piece of actual, non-pureed green bean! Ok, in re-reading that last sentence, it may only be really exciting to us, but we were pretty excited. I also mashed up some soft mac & cheese with a fork and he accepted that too - lots of texture! He also took 20 oz of milk today, which is pretty good for Gabe.

Well, it is getting pretty late. I don't know if tonight will be an all night of sleep or interrupted, so I had better get some sleep in while I still can. Before I go, I need to extend another round of 'thank yous', just because I think it may have been a while. Always know how grateful we remain to everyone who keeps us close in thought and prayer. There are times when life does feel a little overwhelming, in a normal way that life just becomes "a little too much", like it would for anyone. Everyone has their own struggles and they are important. We appreciate you lifting us in the midst of your own day-to-day worries and please know we think of you too. Hope you all had a Good Friday.

Happy St. Patrick's Day!!

We had fun today! Everybody had their green on to celebrate. Every morning the boys have milk at breakfast, and there was even a bit o' "blarney" (aka: green sprinkles) in their milk. After their many questions about what was in their milk, they finally smiled, caught on to the fun of it and even drank it. Gabe discovered Kendrick's beads and had fun rolling them around in his hands. Eventually they wound up in his mouth and had to be replaced with baby toys. Ginger has us really working on continuing to get different textures in his hands and the beads definitely fit the bill. We had such a nice weekend. Josh and the older boys worked on demo in the bathroom we decided to update. It has needed updating since moved in, but you know how projects at home go, there are always reasons to put them off. Josh has had to work on some things and has commented on the moisture he encounters and we have often worried about moisture and maybe mold in the walls, so it was time to do something about it. It isn't too pretty under the tile (and the tile wasn't so wonderful either), so I know we made the right decision. It will be a bit chaotic the next few weeks as the main bathroom (and only tub) is in disarray, but it will be worth it when it is finished. Josh is doing most of the work (with help) to save us some big $$, he is quite handy that way. I took some pictures of the guys working in the bathroom, then I had to leave - I couldn't watch my boys with hammers. I envisioned them with their toy hammers, but I was wrong. No trips to the ER, so it all worked out ok. Sunday we went to mass and then decorated Easter Eggs. I think the boys are ready and excited for holy week. We have an Easter book they got either last year or the year before and have begun reading it. They've learned so much about what Easter really is about and it makes us so proud of them. We were sitting in mass for Palm Sunday and they each wanted their own program as the service revolved around The Passion. Kendrick pointed to the picture of St. Ben's on the front of the booklet and excitedly shook my arm exclaiming "That's my school!". Then he noted the cross on the roof above the entrance and whispered loudly while pointing "Hey, that is where Jesus died". So they do pay attention, huh, how about that.

I got pictures of the demo, and the egg decorating. It is past my bedtime, so I will try to get them posted in the morning. Hope you all had a lovely weekend as well.