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.