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.