"I Came Here to Live"

Gabriel had a routine checkup with Dr. Rouse this morning and it is amazing how quickly we were in and out and on our way. There wasn't much to say! Dr. Rouse, Gabe's surgeon for those who don't remember, came in and just stood in the doorway smiling at a very active Gabe who was grunting and trying to climb into a big chair. Gabe made it up into the chair unaided, plopped his little pamper-butt down and grinned at each of us. There was no doubt in his mind he would make it - never has been, I don't think. We talked for a bit and the boys filled Dr. Rouse in on our recent excursion to the Smokey Mountains as Gabe climbed up and down the chairs and explored the room, stopping now and then to identify (usually incorrectly) the colored tiles on the floor. Eventually we got around to the exam, which was pretty unremarkable. His ribcage isn't pulled in as tightly as it was 6 months ago, which is good. We were a little concerned that since it was pulled in so much due to the scar tissue and the size of his patch, improvement in his rib cage COULD be a sign that the patch was coming undone. Since there have been no other symptoms, Dr. Rouse didn't think so but we have scheduled a yearly xray in November before we see him again to monitor the patch. We know if we get worried, either he or our pediatrician will order the xray sooner to ease our minds. We are so thankful for the "normal" life we have been leading for the last year, but sometimes it brings on a slight sense of unease...it can't really be this easy can it? Shouldn't we still be dealing with problems? medications? medical equipment? therapy at least?? He doesn't need any of it and is thriving...up to a whopping 30 lbs! We have reached that lovely place where there has been just enough time and distance that while we have not forgotten all that has transpired (not expecting or really even hoping for that) but it can sit on the back burner and we can enjoy where we are today. We continue to pray this stretch of good health holds out for all of our boys, just as we continue to pray for those who are not so fortunate as we are.

MOST of the time, we live from day to day and don't dwell on what has been, but Sunday night we went back in time, just for a moment. After a long day of packing up, driving home and then unpacking from a wonderful few days away from the "real world", Josh and I were unwinding on the couch and flipping channels after three exhausted little boys had been tucked in for the night. We landed on a GAC special featuring Trace Adkins on his 10 day USO tour. It was a little emotional for me coming from a military family, but not unexpected or overwhelming. But I was not prepared for one stanza in one song I had not heard before. One of the soldiers had tattooed a line from a Trace Adkins song on his wrists. One wrist stated "I came here to live" the other read, "I didn't come here to die". It was moving and touching to see what the song meant to the soldier and how much the soldier's actions meant to the artist, and when the recording of the live USO performance of the song began, I expected a little mist in the eyes or a lump in the throat, but not the sudden surge of raw emotions that had nothing to do with the patriotic nostalgia and worry that comes from being a "military brat". The last verse of the song Trace had written cut like a sharp knife on a barely healing wound.

The verse goes like this:
"For eighteen days all I remember
Was settin' there at his side
Sayin' son open up your eyes
Just open up your eyes
'Cause you came here to live
You didn't come here to die
Son you came here to live"

As I listened to the words set to melody and saw the feeling on the face of the singer, my own raw emotions from over two years ago came rushing back in sharp waves. Nothing was certain those early days or weeks, but as time passed it was apparent to everyone that our son came here to live. God was with him before he entered this world and gave Gabriel the strength he needed - to give us all the faith we needed to get through a seemingly impossible situation. Gabriel means "strength from God" and was chosen very deliberately. He came here to live, and he is, not just physically either. He is stubborn and lively and engaging and strong-willed! Tempermental and joyful all wrapped into one. He makes us laugh daily, whether he has stuck out his stubborn lip and lowered his eyebrows or is peeking back at us upside down through his legs, grinning.

The body is weak and not meant as permanent housing, we all know that. We've witnessed the miracle of modern medicine and all that can be accomplished, or "saved" so to speak. We may win physical battles along the way, eat healthy, exercise, beat the flu, beat cancer and survive physically against all odds, but in the end, eventually, the body will fail us. We may win the battles, but we'll never win the war. In all its glory and wonder of perfect design, the body was designed to be temporary. I'm not suggesting all of this as a reason not to take care of our physical selves, quite the opposite. We have an undetermined amount of time in this one body and the more time we have here, the more time we have to win the spiritual war, which IS possible.

Dad taught me not to worry about things I can't control - which is most things. But I also learned that there are a very few things within my control - such as my own actions and responses to what happens to me, that IS beyond my control. (ok, that was as clear as mud, but if you read it a few times, it makes sense) I am still learning, but am getting better I think, a little wiser. I can choose to be unhappy or grumpy, which is necessary sometimes, and then I am able to choose happiness. To get over myself and those things I can't change - if I don't love something about my life, there may not be a lot of options, but I am learning to work as a team with what I have to fix it. We're here to live - to live! There is more than one way to die - physically, emotionally, spiritually...and through my infant son and God's grace, I have learned that I too came here to live!

Countdown to Gabe's birthday

Thanks to all who have been with us on this journey! Gabriel will be 2 on Sunday! I have another slideshow that I will post on Sunday, highlighting more of the past year.

Make a Smilebox slideshow

Run of the mill update

How exciting to say things are ordinary - sounds strange, like a contradiction. We have had a very uneventful winter, until this past week! All three boys are on antibiotics for strep, and doing very well. One would think that three kids with strep would be miserable, and while it hasn't been a holiday, everyone responded to the meds just like we'd want them to. By the time Gabe started with a fever, Kendrick had already popped positive on his strep test and was on antibiotics. When I called the pediatrician, they went straight to the meds and didn't worry about the culture. We've gotten lots of sympathy from friends and family, but truth be told, I don't feel like we need it. Who cares? Ok, so it sounds a little "wrong" for a mother to say such a thing when her child/children have something like strep, but then you'd have to understand that our perspective has changed. We can deal with this. We know what to do. We can give our children the medicine they need, we can give the something to drink and they are able to drink it, we can provide comfort and sympathy when they don't feel well. We aren't overwhelmed with helplessness by something like strep. So while we do care that our boys are sick and are doing everything we can for them - we are blessed that everything we are doing is enough. So really, in the grand scheme, who cares about a little strep infection.

On to Gabe. This past month he had a follow up with Dr. Rouse in surgery followed a few days later by his check up with Dr. Stevens in pulmonology. During both appointments we were able to report that Gabriel had been discharged from first steps and was reaching all of his developmental milestones. At both appointments, percentiles were above the 50th for his weight and height. A year ago we were struggling with his weight and feeding issues. Today he eats more than either of his big brothers do. The spicier, the better! Dr. Stevens actually asked when we last had to give him a breathing to which I was able to reply - the last time he was on a schedule for them. Meaning, we haven't given him a treatment since we were able to go to PRN.

We don't know why Gabe is doing so well and others we know continue to struggle. No one is more or less deserving. We don't have these answers, but we continue to pray not only for Gabe's continued good health and that he may never need another surgery, despite the what ifs and possibilities, but we also pray that others will see their children restored to good health. For those who have always had healthy children as we have been so lucky with Justin and Kendrick, we pray it will always be so.

On another note for those who still check here. Over the boys spring break, we are planning to spend a few days in Indy - without any appointments! We are planning to join the Hufty's in a run to raise money for Riley, then on Sunday March 22nd we plan to host a dinner at the Ronald McDonald House inside of Riley - joined by a couple of other families to help. If anyone reading this is interested in helping, we would love your support. This is an important opportunity to give back some of what was given to us when we needed it most. We will be feeding approximately 75 to 100 people along with providing all of the paper goods, utensils and drinks. If anyone would like to donate some paper goods, 2 liters or even a little cash to help us with the cost, that would be fantastic. Prayers are always appreciated as well. Thanks everybody!!

I forgot about something, deliberately or inadvertently, I am not sure.

We rarely miss Grey's Anatomy - either "live" or on dvr. This week a child was running out of time, seemingly HAD run out of time, and his doctors brought in his mother and told her to help him let go. She held his hands and told him how much she loved him. Then she whispered that he could go, she would be ok and he shouldn't worry about her. Ofcourse Josh and I are sitting on the couch and I am unable to swallow for the lump in my throat. We aren't speaking to each other because we know where our thoughts are. It turns out I didn't know as much as I thought I did.

Last night we are both having trouble sleeping and we are lying in bed talking, mostly about Father Gregory's homily. I missed it since I was teaching the children's liturgy, but it had been on Josh's mind most of the day and he relayed what he remembered to me. The homily centered around FOCA and Father, in the eloquent way he has, explained things in a way that takes a seemingly complicated topic and makes it really quite simple. The point I am weaving my way around to is the sensitivity it touches off in us, how we begged God for our child's life and were blessed. It is impossible for us to entertain willfully ending a child's life, at any stage. The parallels are starting to converge. I had our experience with Gabe swirling around in my mind while watching a fictional family experience real emotions...Josh was remembering something a little more specific...something I forgot. He reminded me last night. May 25th 2007, we are at Gabriel's bedside, just the two of us, watching him fight for life. We know that very soon Dr. Rouse will come back and give us hope or likely tell us there is nothing more than can do. I am holding Gabriel's hands and pleading for him to stay with us...then I concede that it is ok for him to go. We prayed together and apart quite a bit during that time and I remember begging God to fix him, to let him stay with us. I also remember finally praying that if he couldn't be fixed here, that Jesus would hold him and free him from pain. I forgot I said it out loud to Gabriel, but Josh hadn't forgotten. I can't imagine what he must felt standing there, hearing me say that to our baby son.

I don't know why this is coming out now - but it has been a strange week of revisiting. The week began with our discharge from First Steps, then Gabe's completely normal well-baby check, then the fictional TV show that took us back to a very real near loss. Friday night I got to have a late dinner with a friend who was with us in the NICU, just after I said those words to Gabriel and just before Dr. Rouse came back from reviewing his xrays - we talked about those moments this past Friday night and I don't think we had before. Everything happens for a reason - no coincidences.

Gabe had a well-baby visit yesterday - and everyone was not only happy to see him and his big brothers, but thrilled with his progress. The nurse asked me what therapy he was receiving and I was able to report that on Monday (the day before the appointment) we signed our official discharge papers from First Steps. There is nothing we need from the program any longer - no OT, no PT, no developmental therapy of any kind necessary. She stared at me for a second and then gave us all a big small saying, "Isn't that amazing! What a miracle boy". Couldn't argue with her on that one. She weighed him, took all of his measurements and then we waited for Dr. Voyles. When he came in, we went over the charts and discussed the percentiles. Last year, about this time we were just weaning from the tube after Gabe's nasty flu - his weight was dropping and we were struggling to keep the weight on and still be allowed to push for oral feedings and limited tube feedings...we were slipping below the 20th percentile and keeping a close eye on his diet and his weight. Yesterday he weighed in at 26 lbs - which put him at the 45th percentile!! Height was in the 55th percentile. He is right in the middle - right in the NORMAL range. What more could we ask for? We went on to discuss all of the age-appropriate milestones from speech and receptive language to climbing and eating habits! Dr. Voyles examined him then looked at me and asked, "Do you ever just forget how he started out in life?" I responded "no" but knew what he was getting at. Everything we and our team of therapists and medical professionals have worked for the past 20 months (plus more if you include maternity) has pretty much been achieved. It would be easy to forget how we started out just to look at him. If you didn't know us or Gabe and his story and we met somewhere - you would never guess what he had been through. You wouldn't even get a feeling or suspicion. He chatters and learns new words all the time, he smiles, laughs, plays and throws fits. He eats all kinds of new foods - and throws other new foods on the floor, then watches to see how quickly the dog scampers over to clean it up. He spits at the table and then laughs and spits harder when his brothers laugh at him. He loves to climb up and down the basement stairs, carries his own dirty clothes to the hamper, smiles and flirts coyly with strangers, plays peek-a-boo and bangs metal bowls with a wooden spoon. He is just like any other budding toddler. He bears the physical scars that continue to fade, but will never vanish - just as we thankfully bear all of the emotional ones. Those scars are not quite faded enough for me to say "yes, sometimes I DO forget". But I suppose the longer we function under the guise of normalcy, the more possible that may be. I don't want to look at him and think about how close we came to never knowing this little boy and the helpless anguish of those first hours, days and weeks..., but I'm not sure I want to completely forget either. It is amazing how simple and simultaneously complicated my thoughts can be at times. As we have done in the past, we will be thankful for where we are, remain vigilant and not dwell on what may yet lie ahead. Thanks again for coming along on this journey - the here and now is a wonderful place to be!

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.