Yesterday, Mr. Gabe was just not himself. He was quite moody and not very cooperative and as the day wore on, he began to feel warm. UH OH we thought to ourselves. He was crankiest when he would lie down, which immediately had me thinking "ears". Once we had a confirmed fever, it was off to the pediatrician where he confirmed an ear infection. We started on the antibiotic and tylenol and by bedtime, he was all smiles and ready to play - and I had to accept that bedtime was still a little ways off! As you can imagine, I had a hard time minding very much - it is always nice when your little ones are obviously feeling better. Hopefully this is just an isolated incident - since we are just heading into winter, it makes me a little uneasy that it might not be. Although he perked up so quickly, maybe it won't be so bad? Oh well, if it becomes a more chronic problem, at least this is one area of medicine that I am comfortable with - and I know a guy. In the grand scheme of things, we can handle this.

In other news, we met with our First Steps team to write a service plan for OT (oral/feeding issues) and PT for his trunk weakness. He will start out at once a week every week on both therapies for as long as we (us and the therapists) see that it is necessary. Should be interesting to see how we will work this into our schedule - but as always, we'll make it work!

In case you were wondering, we still haven't heard anything official on the sleep study results. We are waiting semi-patiently. I did call yesterday and cheerfully left a message stating that whenever they happened to get results and happened to get time to review them and happened to have time to call, we would love to hear about it. If things go like before, hopefully they got the preliminary results pretty quickly - I know the formal report will take longer.

Sleep Study Complete

Gabe just finished his fourth sleep study and although we ofcourse will not know results for several days (since it is a weekend), I can tell you it went well. They never had to turn the oxygen on at all. That's right, he spent the entire night on room air! During his feedings, I would study the CO2 monitor and it was usually in the upper 30's to lower 40's and I never saw it go into the 50's. His respiratory rate was usually in the lower 40's, sometimes the lower 50's. To refresh your memory, when we left the NICU, it was pretty exciting if he hung out in the 60's, and he frequently drifted up higher. Our last full night sleep study the CO2's were averaged in the upper 50's and we left on a full liter of oxygen. I am remembering how blindsided we felt after those studies - we looked at it as just another step to complete before we checked out of Chez Riley, never did we imagine it would wind up as a potential road block. If we had gotten the trach, we might just now be leaving the hospital.

In other news - we saw Dr. Rouse yesterday afternoon and Gabe has his button now, so feedings will be much easier and we won't have to worry about his Gtube snagging on something, or getting yanked on during playtime. He's already been on his tummy and was very happy to be there. We will have to get in a lot of tummy time work, since we haven't done much of that in the last month. He also had some blood drawn for pulmonology to check iron, blood gases and bili.

Since we were coming on a Friday, the big brothers came along, but were very disappointed in Indianapolis. The original plan was for Kaci and Justin to take them to the Zoo Boo, but it was raining. Plan B was the Children's museum, which was only open for the haunted house stuff, Plan C was to meet up with us at the hospital and ride the people mover but it is out of service for winterization maintenance. Soooo...they got to visit with the NICU nurses which they enjoyed (sorry you were the consolation prize ladies!) and then Kaci and Justin opted to brave Chuck E Cheese with them. I haven't heard how that went yet. I am going to sign off and see if Josh is here to pick us up yet - but I have to say again how much we appreciate all of your prayers. He always listens, I know, but aren't we fortunate that we are seeing the benefits and the power of those prayers. We were in shock after the first sleep study and knew we had to give the trach careful consideration, but something nagged at me not to do it. We wanted so much for somebody to just tell us what the right answer was - we knew there were many opinions and even though the opposition to the trach couldn't come right out and say it easily, we felt the tug. I am so grateful we listened and followed what we felt was right. Ok, I haven't had much sleep so it is not a good time to get emotional - later everybody!!

If you get time - check out the prayer blog, there are a couple of new requests.

http://chainofprayers.blogspot.com/

Darla - if you read this, I'd like to put something about Jarrett on the prayer blog, especially since you are still searching for answers. If you get a chance, email me what you would like people to know and what you would like them to pray for. wittyaud@yahoo.com

Happy 5 months!

Gabe is 5 months old today! It just doesn't seem like he should be that old, but we've been home from the hospital exactly 3 months, so it seems like we have lived two lives with him. The life we stood vigil over in the hospital, but really had no control over and the day we brought him home, which began a new phase....which, let's face it, we still don't really have control over! As you can see from the pictures, he is starting to make his own decisions. He pulled at the tubing until he finally popped it off, and then proceeded to chew on it. Josh commented it was like looking at someone who usually wears glasses without them.

Last night, Justin wanted to say his prayers with Gabe - it was sweet, and ofcourse I got pictures. just scroll down.

The boys had a great weekend camping with their friends! But I think they missed Gabe - they were all over him almost from the minute they walked in the door. I had to shoo them to the bathroom to get cleaned up a bit first! I put a few more pictures down below. Thanks for signing the guestbook - we love the pictures and comments!!

I have one quick side comment about Monday night football. Dear dear Elaine, was there ever really any doubt as to what the outcome would be?

Quiet Day

Gabe and I are hanging out home, enjoying a quiet day today. Josh and the older two are camping out at Harmonie State park with some friends. I haven't heard from them yet today, so I am sure they are having a wonderful time - and enjoying perfect camping weather. There were multiple times this spring and we would walk outside and sort of sigh at the "perfect camping weather", knowing it would be a while until we really got to enjoy it. The guys have been planning this weekend for many weeks, so I am so glad they were blessed with perfect weather - it's like a gift!

Thursday we saw Dr. Stanley, developmental peds, here in Evansville. We saw her last back in late August, same day as the last sleep study. She was absolutely amazed with Gabe. She told me she was half afraid to come in the room, wondering if she would see a baby on a vent. She was pleasantly surprised to see no trach or vent, and her jaw hit the floor when I told her about our last sleep study and Gabe's tremendous improvement. I told her we hadn't heard any mentioned of a trach since the last study and she beamed at us and uttered "I should hope not". She was pleased he had the Gtube, since it seems eating is just not safe, and since we've gotten it, he is more "orally inclined". He likes putting stuff in his mouth, now that he knows it isn't going to be a liquid. She was glad that the puree feedings are going well and also happy to hear we are in the process of getting some oral stimulation with an Occupational Therapist through first steps. Her main area of concern is his trunk strength, which I know is a little delayed. She felt it was worth having PT take a look at him again, since we are developing a service plan with first steps anyway. With the Gtube placement, we have been pretty tentative about "tummy time" and still use the boppy for that. We were also pretty tentative about sitting him up for the first couple of weeks after surgery, so I know that slowed down the proces as well. I had him in the bumpo this morning and also did some tummy time on the boppy. I think I wore him out, since he just conked out in his bouncer seat. Oh welll, it's good for him! I think that is the gyst of that appointment. His weight and length are right on target, but have drifted down to the lower range of normal, so she wants to stick with the fortifying of the breast milk for now, especially since we have been increasing his volume slowly, due to his reflux. The reflux is really improving too, so maybe we'll be more comfortable upping the volume.

Next week we see pulmonology here in Evansville and then journey back up to Indy to see dr. Rouse and hopefully get switched to the button on the Gtube and then we will have the full night sleep study. I think I am more nervous about this test than any other - since the first one delivered us such a shock. With the last test, I was just hoping that the results weren't worse. I wasn't prepared for them to be improved, and definitely not so dramatically. Things have been good for so many months now, it makes me wonder what lies in store - when we can really relax and just trust that the setbacks are behind us. Kaci - your comments really touched off in me. I look back through those pictures too. Just last night I scanned back through some of the early postings and the accompanying comments. I hadn't done that in a while. It really hasn't been that long, but he looks so good now the summer's events seem like a bad dream that we are finally waking up from. It's a miracle that he is here at all, it's humbling that he is not just improving but thriving. Thanks for your comments. You're right, it was so painful, but enriching and inspiring as well. We'll never be the same - and I thank God for it! Thanks again for everyone's comments and for signing the Guestbook - I haven't thanked you all in long time, and I am sorry for that. Keeping up the blog has been carthatic It has served as a record and testament to how far we've come, and it has provided us with both an outlet and a chance to receive encouragement and to be uplifted by our friends and family.

Check out my Guestbook!

correction

I got the blog address wrong for the site I mentioned in the last post (thanks for pointing that out Angela!). Take a look when you get time - just grab the tissues first. The corrected address is listed in this post, and is corrected in the last one.

http://conorbootheandgirls.blogspot.com

Listen

I just finished reading through a blog site I learned about earlier today from Angela Huntman - Josh's cousin's wife. I originally published it on the prayer blog, but after reading through it (definitely visit, but make sure you have some time) I wanted to mention it here too. It was published by a family who found out at about 6 months gestation their daughter was a trisomy 18. http://conorbootheandgirls.blogspot.com/

Many of you know this, but we went through a few agonizing days fearing this would be our diagnosis. Our maternal fetal specialist felt we were at high risk for a chromosomal anomaly and with the markers they found on the ultrasound, trisomy 18 seemed to be at the top of the list. I remember at the time, we said we wouldn't have an amnio and it didn't matter, we would just take things as they came. But when we were there in the office, having our worst fears confirmed from the original ultrasound, we knew we couldn't wait four and a half more months to know what we were up against. The wait for the early amnio results was excruciating. I told myself that I wouldn't go online, but then I thought I would find all sorts of "evidence" that would prove them wrong - I didn't really need their results b/c I would research on my own and come up with proof that everything was fine and there were other logical explanations for what the doctors saw on the ultrasound - it would all resolve in time. What's the phrase about Denial?...a river in Egypt?...you get the idea. Well, everything I found took us right back to Trisomy 18. The amnio was done on a Tuesday and we had the first results 8 days later - the big chromosomal defects had been ruled out, but I knew they would be...

I have digressed from the original point of this post - the other blog. As I was reading their words about their own experiences, it took me back. Our actual similarities end with the waiting period from the amniocentesis and the delivery of the results, but the way the mother told their story, it just resonated so deeply. She wasn't afraid to share everything. She mentioned time and again that she could say things through the keyboard she could never say in person. If I try to say that I am not a talker, most of you will laugh yourselves to the floor - if you know me, you know better! But I've also got a gift for "meandering" in my words to the point that what I meant to say, or what I should have said can get lost - or there are certain things that are just too hard to verbalize. I know I can't put words together so beautifully as she did, but her courage in sharing inspired me to share one story that I have kept private to all but a handful.

Ever since I was about 10 years old, I believed that when God spoke to me, he did it through song. Why not? I grew up in a home where music - all different types and genres - was part of life. How many have actually heard His voice? I think for most of us regulars, it is subtle. Maybe a timely phone call from a friend or loved one, or kind words from a stranger. Maybe you felt the Sunday sermon was directed at you, or your child did something unexpected and precious (like finding pink beads on the playground and saving them just for you). I think God speaks to us in many ways and we have to find a way to be quiet and listen. He is our Father, but he seldom grabs us by the chin and pulls our eyes on His and says "Listen to me..." It's up to us to stop and pay attention, or we'll miss it. The way it has worked for me in the past have been times when I heard a song, just at random - not one I picked out to listen to at that moment - and knew it was meant for me to hear at that particular time. There are 4 examples of when this has happened, once when I knew Josh was the man I was to marry (he's the only person I have shared this one with, so I will leave the rest of that story just for us - just trying to establish that this is infrequent and powerful) and the most recent was when I knew Gabriel would be ok, eventually. It was a Saturday night, after the amnio, but before we had any answers. The boys had gone to bed and Josh had gone to work. I had spent hours on the internet, having my worst fears validated. I had finally gone to bed, but couldn't sleep for all of the noise in my head, so I turned on the TV. Since I hoped to fall asleep soon and didn't want to get caught up in a movie or other show, I turned the channel to CMT. It was on, but I wasn't really paying attention, just letting my thoughts wander. I began to pray. Until that moment, I hadn't been able to pray - I didn't know what to pray for. I knew what I wanted but I knew it didn't work that way. We don't just ask for things and *poof* there you go. But there, in that moment, I was honest with God. I wanted our son to be fine, I wanted that more than I could say, but above all I didn't want him to suffer. I had a feeling that this wasn't all just going to go away as I had originally thought it would. I prayed for strength to face whatever we had to face. I prayed for grace to accept whatever we had to accept. I gradually became aware of a song I had heard countless times on the radio, but had never seen the video. It is a song about romance and I had never thought about it any other way, but as I watched the scenes flashing across the screen with the music, it all changed with one verse. Craig Morgan was singing "I can't imagine one day without you in it, life alone just wouldn't be worth living. Love would be a wish that never came true. Lord knows I've got more than I deserve but I don't question the prayers I've had answered. I did something right cause baby I got you". As I said, I've always thought of it as a love song for couples, but during this verse there flashed a scene of a young boy playing baseball. Then I knew. I knew that whatever happened, whatever we had to face, we would see our son grow up. Isn't it ironic that I have never seen that video again. Just the one time. Even when we were at Gabe's bedside and he was being baptized, and we all knew the grim reason for his baptism, I held on to those words and that image and I just couldn't accept that we had come so far just to let him go. Even the next day when Dr Rouse approached us and we knew the words he would speak at that moment would either offer us hope, or dash it all, those words played through my mind. I don't know why prayers are answered so differently, why some are answered and others don't appear to be. Just that we aren't meant to question it. Oh we will, it's our nature. And I think we do get answers, sometimes, if we listen very carefully.

First Steps was here today - now that we have the swallow study, we are trying to get some oral stim set up. We should get things going pretty quickly, since we don't have to repeat the initial evaluation and hopefully will be working with a therapist by early November. He is doing great and really likes putting stuff in his mouth, just like a normal baby. He can really get a hold of that pacifier when he wants it now, which was pretty wishy/washy before. The oral pureed feedings are going well - we tried prunes last night and tonight and he seemed to actually enjoy them! We could hear him swallowing well and there was no gagging, well I admit I might have gagged a little...I don't think pureed prunes look or smell pretty.

A side note that has nothing to do with Gabe - last night I got onto Justin and ultimately put him in time-out. We always talk about why he is there, once things settle down and this time was no different. We talked and he started crying and we eventually worked everything out - but as he was getting up he said he had something in his lunch box for me. He found some small pink beads on the playground at recess and told me he thought they were pretty and wanted to save them as a special surprise for me. So he carried them in and put them in his lunch box, because I always get his lunch ready and he knew I'd find them in there. Wow - he's good isn't he? I put him to bed - as he commented, "see Mommy, I'm talking really nice now, do you like that?". I tucked him in, kissed him goodnight and after backing out of the room, I put the beads in a baggy and wrote the story of them on the outside in permanent marker. As I was writing, I felt a peculiar mixture of sweetness, pride that he could be so thoughtful, guilt b/c I was punishing him all the while these beads were sitting in his lunch box and also wonder - had I just been played? I'll stick with the sweet story.

Nice weekend

In many ways, it was a really nice weekend. We got in some good family time, beautiful weather...etc If you live around here and didn't make it outside, you really missed out! Kaci and Big Justin came down for a visit and we had a really nice time visiting - and playing phase 10. I have to know, has anyone actually made it all the way through that game? We did have a lot of players - it actually kind of felt like Thanksgiving or something b/c all three Wittmer kids and their spouses were present, plus all the grandkids. Yes, to date we are the only grandchild contributors, hopefully that will change soonish....? Ok, I'm not the one who's supposed to be applying that sort of pressure, so I'll leave that to the grandparents.

That was our Saturday. Sunday the FOP hosted a family day out at the camp. We all enjoyed it, especially Justin and Kendrick. After we got there, we halfway wished we had brought Gabe, since it was a beautiful day and not too crowded, but it is probably better that we resisted temptation. He looks so good and is doing so well by appearances that it makes it hard to remember sometimes we still need to be cautious. While we were there, we were talking about Gabe's first birthday. We are tentatively thinking this occasion would make a great "coming out" opportunity. Blog allows the option to "poll" your viewers, but we never had anything we particularly cared to poll everybody on. Gabe's birthday falls on the Saturday of Memorial Day weekend, and we know this would be a good weekend for some and a bad one for others. If I can figure it out, I am going to poll everybody on what weekend would work out better for them. We are thinking this will be an open invitation event - if you want to come, then come - even if we have never met face-to-face, even if you are not local, if you can manage it and want to celebrate with us, come celebrate with us. Ofcourse, we don't know what Josh's schedule will be and won't until January, so that may trump the poll decisions!!

Ok, I don't have time to figure out the polling thing just now, but watch for it!! We really want to stress that EVERYONE is invited - family, friends, health care folks - EVERYONE!!

Sorry for the delay in update - we made it to Indy and back in one day. We left around 7 yesterday morning and got home around 5PM, so it wasn't too bad. We made up to the outpatient center in good time and didn't have to wait too long. We saw the nurse that specializes in Gtubes and she took out the tube from surgery and tried to put in the button, but it wouldn't go in, and the site started bleeding. She decided it wasn't healed enough and put in a different tube with a disc next to the skin to hold it - so he didn't get any stitches. As you can imagine, he was pretty irate over all of the probing into his belly, but calmed down pretty quickly after she was done. Since there was some difficulty getting everything squared away, she wanted us to get a study done in fluorscopy, to make sure the tube was going into the stomach. Sure, no problem! OK, after we got downstairs there was one problem, they don't do fluorscopy until 1:30, so we had an hour to kill. The line for the wraps was pretty long, so most of our wait was used up getting lunch! The test itself took a matter of minutes, and we were on our way home!

Quick trip to Indy tomorrow

Welllll...while getting Gabe changed earlier, I caught a glimpse at the site where his tube goes into his tummy under the nipple protecting it and something didn't look right. When I moved the nipple up I noticed the stitches were around the tube and no longer in Gabe. Ok....don't panic...call Indy. Fortunately Dr. Rouse was the attending surgeon, so I didn't have to explain anything - just told him what happened. We had just seen him yesterday here in Evansville, so this was a surprise to both of us. He talked us through taping the tube so it wouldn't (hopefully) come out and asked us to get to Indy first thing in the morning. He didn't really know who to refer us to down here, especially given Gabe's anatomy inside and the fact that the tube has only been in two weeks. We would feel better having someone who knows Gabe take care of it anyway, so we'll deal with the drive. So it looks like he'll be getting his "button" about two weeks early.

Speaking of "excitement", word is getting around that somebody was trying to get into our house last night. Everybody is fine, and he didn't get in. The man had been released from St Mary's Hospital for drug use and somehow wound up banging on our front door in a panic. Josh quickly got on the phone and, as I am sure you can imagine, we had plenty of help in a matter of minutes. Fortunately Justin and Kendrick slept through the whole incident. We really do live in a good neighborhood, this was just a freak thing. Talk about adrenaline!

Gabe's laugh

Ok, for some reason the picture is less than stellar, but if you listen, you can hear his little giggles. They aren't big belly laughs just yet, but they are precious just the same. Justin was the one who got it out of him tonight. Anyway, enjoy - and sorry the picture isn't clearer.

There's a few pictures of Gabe eating if you scroll down!

I've had multiple people asking about the prayer blog. The address is http://chainofprayers.blogspot.com and instructions for prayer request posts are listed under the profile section there. We all know the power of prayer, so don't hesitate to let me know if there is anything you want posted there.

It's been a busy week, so there hasn't been a lot of time to update. There hasn't really been much new to report anyway - just continuing to figure out what is normal. Josh worked quite a bit down at the Fall Festival, and then again this morning at the YMCA half marathon. He ran it the first year they had it, and when I saw him immediately after he crossed the finish line he emphatically gasped out "...Never again!". He may change his mind and run it again, but for now I think he is content to direct traffic and cheer on the runners!

What's new for Gabe? Well, when we first started the cereal and purees, he seemed to object at first and then reconsider - His face said "ok, this is not too bad, I'm open to it". Now he seems to be enjoying "eating" a little better. He likes to "help" get the cereal in his mouth by sticking his fist in his mouth after he gets a bite. I am not sure just how much is actually making it into his tummy, but at least eating is becoming something positive for him. We are still really "practising", but hopefully this will get him ready for when he is old enough to truly get his nutrition orally. He is also starting to laugh a little bit, which has us willing to do just about anything to hear it! We heard his first little giggle in the preop area, just before he got the Gtube - we figured it would be a little while before we heard it again, but last Sunday I was in the checkout line at the grocery store when my phone rang. Josh and Justin had elicited quite a chuckle from Gabe by placing a "vibrating monkey" toy on his belly. I got to hear it over the phone - a couple times, probably to the irritation of the checkout clerk. She didn't seem too aggravated at me and fortunately there wasn't anybody else in line behind me. Kendrick and I threw the groceries in the car and raced home to hopefully catch a live performance (amazingly, the eggs were all still intact).

Yesterday I was at the store again and ran into a Riley Dad. His son, Colin, was in module 2 for approximately 3 weeks in June. He told me that one of their neighbors from those days passed away this week. Apparently the baby was about 5 months old and had been through 4 or 5 pacemakers. I vaguely remembered the family - I talked to Colin's family quite a bit because they are from Evansville and actually live just a couple of miles away, and we have the same pediatrician. We stood in the parking lot and just talked for about 15 minutes. Standing there reminded me of those days in the NICU, after we knew Gabe would be ok even if he still had quite a bit of work left to do but we were still reminded that others did not yet have that certainty of their own babies. Even more poignant were the times you walked down the hall to the module and began to realize someone had lost their battle. It was difficult to reconcile the myriad of emotions that hit. My heart broke a little for them - we'd had a glimpse of what that kind of pain could be like that, but were fortunate enough to get only a glimpse. At the same time there was pain and compassion for them, there was relief, and then a little guilt. Why some are blessed with life and some are not, I can't answer and know I am not meant to. If you have a minute, say prayer for this family and the others going through unbearable grief. If you have kids, maybe hug them a little tighter or just a minute longer today - I did last night.

Josh and I were talking a bit about timing today and I realized that tomorrow we will have officially been home longer than we have been at Riley. Gabe was 4 months old Monday the 24, which was also exactly 2 months from the day we left Riley with him, but we spent 5 days up there last week, so tomorrow we will have made up those days. So, Thursday will actually be the day we will have been home longer. The day we got on the elevator with Gabriel, walked through the halls of the hospital, throuh the ROC and to the car was almost surreal. We had been there long enough that it was a huge change in routine, in what had become normal, to have Gabe with us as we went through that door. It was the same doors we went in and out of every day, sometimes multiple times per day, for two months. Now we look back from today to that day and the routine we have established at home and it seems like it has been ages since we lived any other life than the one here at home. But on Monday (last week), when we walked through those same doors, two months vanished in a blink - didn't we just leave with him? We knew the sights and sounds, knew if the patio was open or closed, and had some idea who might be working in the NICU that day and later that night. Our first night in the hospital last week, the nurse handed me the menu for nursing mothers, and even though I studied it and contemplated what to order, I didn't need to, I knew what was listed for breakfast, lunch and dinner. Isn't it amazing how our views of time bend and change. Time is constant but our perception of it is not.