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