Home!

Far left is a shot of Gabe in the pre-op area in his little surgery gown. Daddy wasn't too excited about the pink ribbon trim, but it was the gown with the least amount of pink, so we made do. Top left is Gabe waking up back in his room after his first good nap. He was awake when we made the trek from the post-op area to his room, but he was grumpy (understandable!) and conked out after getting some more morphine shortly after we arrived in the infant unit. Top right is a peek at Gabe's new feeding. I don't think he is too sure about it yet (he's still a little sore with a cough, but settles pretty quickly. He actually had his las dose or morphine barely 12 hours after surgy, tylenol has been sufficient - tough guy!) but I am sure he is even happier than we are to be done with a tube dow his nose and throat.

Today was a lot of hurry up and wait. Dr. Duffy (remember him?) wanted to keep Gabe through at least 2-3 feedings today, to make sure he could handle being back at his full feeding amount. After the second went in, we were antsy to go home. We didn't make too much of a nuisance of ourselves, (well, I don't think we did) but after two nights of not a lot of sleep, we were ready to go!! We finally got out around 6:00 Indy time, after one last quick goodbye in the NICU. We were so tired we just couldn't wait around for shift change, sorry girls if you are checking today! We'll be back October 26th for the full night sleep study, so we will definitely be able to see the night shift. We saw some night shifters while we were here, but also missed a few (we missed Lori and Tabatha especially). Thanks a bunch to all of the nurses, RTs, dieticians, social workers/family services and secretaries who stopped by - it made our stay much nicer. This was our home for two months, after all!

Steady improvement

Gabe was able to start feeding through his new tube this morning. We started, and are still at, half of his normal feedings. He is tolerating it ok and hasn't spit up quite as much as he usually does. We have learned that this tube is a lot different! With the ng tube it could take close to an hour for the entire feeding - with the Gtube it could be over in a matter of minutes if we aren't careful (hold it up too high). Like the ng tube, his milk goes in by gravity, but we don't have to "push" it with a plunger like we did before. It is nice we don't have to hunt for the plunger, but now we have a cap to keep track of. Hopefully they give us an extra? We still have some things to learn about, but we are off to a nice start.

Last night was a pretty lonnng night. Our "roomies" decided to leave their TV on until 4:30 in the morning. By 1 AM, Josh had noticed there wasn't anybody in the parent lounge, so we put some cushions on the floor and took turns sleeping in there while one of us stayed with Gabe. I think we tallied about 3 hours of sleep each, and that wasn't all at once. This morning we were treated to rap music - thankfully they have been sent home, so hopefully we will sleep a little better tonight. we have new roomies already, but they appear to be more "normal" sleepers. I guess we'll find out.

out of surgery

Gabe is out of surgery, but not yet in recovery. Dr. Rouse just left and we are waiting to hear when we can go down and be with him. We were told that surgery went very well, the tip of the liver was sticking to the abdominal wall a little, so the incision is a little larger than planned, but not much. He told us it is the liver sticking is not too unexpected and not a problem, they just had to be extra careful - which Iam sure they would be anyway. Dr. Rouse said Gabe woke up from anesthesia right away and was "ready to tell somebody about he he felt about it." He said he decided it was wise to stand back a little, with Gabe's size and his arms waving about. There has been no argument from the very beginning regarding Gabe's tenacity our ability to fight! Hopefully that settles down by the time he is school age ;)

We were so comforted when it came time to let him be led away for surgery. Ellen Fleig switched surgeries so she could be in on Gabe's surgery, and she not only came into the preop room and talked to us for a while, but she was the one to carry him back. He was smiling and flirting as he went - which was very comforting. She also gave us a gift card for the coffee kiosk downstairs - she's been through all of this before, so she knows!! (for those of you don't remember from previous blogs, Ellen's son Jackson had a left DH and was here for three months, and also came back for a Gtube later). I have picked her brain and nagged her with endless questions both when we were here and since we have been home. It was very comforting to have her here today - looking after him when we couldn't. Thanks Ellen!!

Update

I have a few updates. Amanda Vollmer was diagnosed with laryngomalacia (soft larynx, in which the skin of the larynx will collapse during inhalation - resulting in squeaking noises) and will undergo laser surgery to correct it Monday. Apparently they should be able to take Amanda home the same day as surgery. I am sure they are worried about anesthesia and turning their daughter over to strangers to help her, it isn't easy to do that. We know what God can do and he will hold Amanda for them until they can do it themselves.

My Grandma is home again and there is someone coming to stay with her a few hours every day to help her get lunch and look after her. I don't know too much more, just that she is tired and still not quite herself.

Maria - any news on Maureen?

We ask for continued prayers for Gabriel as he goes to surgery again tomorrow. We have hope that this will be the last surgery until he is much older.

Thanks to all of our prayer warriors out there, it is so comforting to know you are there.

Eventful Day!

OK, it has been a while since I had a lot to report medically. Yesterday was the swallow study. The liquids were not well received (we pretty much expected that) but surprisingly he did fine with the cereal. We were told to stay away from liquids, and that he would likely skip the bottle all together and ultimately just learn from the cup when he is ready for liquids. We have been cleared for purees and she suggested feeding him about two teaspoons of some sort of sweet purees (cereal with breast milk, pears, apples, etc) twice a day to get him more interested in eating by mouth. After that he had a chest xray, which Dr. Rouse told us today was very good.

Today was the flexible bronchoscopy - we didn't stay in the room, (we were willing they just do it with the parents in the waiting room) but we heard he didn't care for it too much. No surprise there. He found that Gabe's adenoids are a little swollen and put him on a nasal spray to help reduce the swelling. Dr. Macke didn't seem to think it was too serious and since everywhere else in his airway looked perfect, Gabe should hopefully grow out of his little obstructive episodes. After the bronch was the EEG and Neuro visit. Nothing but good news there. The EEG looked great and the Neurologist felt that he was almost ready to wean from the phenobarb. We return in November and he will probably start coming off of it then (since he is growing and they haven't increased his dose, he is actually starting to wean now).

Tomorrow is surgery to get the Gtube in and repair his hernia. Surgery is at 1:30, so keep Gabe in your prayers. This so minor compared to all he has been through but ofcourse there are risks with any surgery. Dr. Rouse didn't seem to think Gabe would need to be here more than a couple of days, so hopefully we should be home by the weekend. I think that just about covers it. This afternoon we have been laying low, and napping! My parents are coming over to the hotel, and bringing us Olive Garden take-out for dinner.

Funny Sleepers

I told him I'd get him back.

Even being held straight up!
How can he sleep like that?

We sleep when we can around here!

We are getting all set to return to Riley tomorrow...we'll let you know how things are going. We told he boys they would be staying at Grandma and Grandpa's all week, and they were jumping up and down. So much for being missed - maybe they will a little - but we are glad that they can look at all of this as an advenure, rather than a disruption in their routine. It makes it so much easier to be with Gabriel and to focus on what is happening there. We won't be distracted with worry for the older boys, knowing they will be so well cared for, and having so much fun. Keep Josh in your thoughts tonight, it will be his last night working with Brix, and I know it will be hard for him. I'm sure he would like to get one last bite or find a bunch of drugs or something like that. He's really going to miss working with Brix and everyone else in the K-9 unit. The rest of us will miss Brix around here as well. Even though he is a well-trained working dog, he loves to play with the rest of us at home too. I'll get some pictures of the two of them and post them later.

Surgery scheduled

We are tentatively scheduled to get the G-tube and repair his hernia from the initial repair on Wednesday, September 26th. We are going to be up there anyway, so that works out pretty well. I am not sure how long we will be up there, but at least a few days I would imagine. We haven't discussed the specifics just yet. We will meet with Dr. Rouse the day before to discuss the details. Too bad we can't stay in the NICU with everyone who knows him so well, but on the up side, we will be able to stay with him during his recovery time in the hospital. It would be hard leaving him over night, now that we haven't needed to! We have been introducing a little bit of cereal (dipped on a pacifier) so he is used to the puree texture for his swallow study. He made faces the first time, as did the older boys the first time they had cereal, but he actually seems to like it now - well, a little. Yesterday he was actually opening his mouth a little in anticipation (looked like a little bird). So maybe there is hope for this eating thing yet - too bad he is too young to do much more than sample!

On another note, Grandpa O is here on a stop-over stay. He and Tim will head on up to Indy tomorrow and pick Mom up at the airport tomorrow evening. She has been in Denver with her Mom while she has been recovering from a broken arm and pancreatitis. Dad's high school reunion is this weekend in indianapolis,sSo the timing is that much better - they will be in Indy anyway! Since Gabe won't exactly have the nurses right there as he did in the NICU, we will need to be with him, so having Mom and Dad up there will be nice when we need to eat, or take shower...you get the idea.

Today we went for a walk in Wesselman's Woods.We had the boys picking out small, medium & large trees - the pictures are of their "measurements". It was so nice to be outside as a family - we figured it was somewhere to get out of the house together & still keep Gabe safe. The weather was perfect and so was our walk - I fear we may be climbing the walls come winter, better take advantage of days like these!

The first picture of Gabe is a hoot - I laugh everytime I look at it! He was reacting to the flash - one can only imagine what he may have been thinking.

Here is the slideshow we did for "Gabriel's Song", written and recorded by Josh's Uncle, Dave Knopsnyder, after he visited Gabriel at Riley. It is a beautiful song from Gabe's perspective - I'm glad you'll be able to hear it now, not just read the lyrics!

I think I finally figured this out, kind of. If it works, this is the slideshow we put together for everyone at Riley as a thank you. We did a slishow for Gabriel's song, but it got messed up. Once I get it fixed, I will get it on here.

Sweet Angel

Isn't he just a sleeping angel? He still loves snuggling stuff, either snoopy or little pieces of fabric. That was always a comfort to him, even back in the NICU.

If you have a minute, check out http://chainofprayers.blogspot.com/

There a couple of new prayer requests. The most recent is from the family of six week old Amanda Vollmer. Her big brother Daniel was in Justin's pre-k class last year. Amanda's Mommy and Aunt have commented on our blog many times and through their prayers and emails, have been a tremendous comfort to us and we would ask you to prayer for her and her family. She may be at Riley herself soon and we certainly understand how scary it can be, but what a blessing. We don't have to tell you all how wonderful a place it is, although nobody wants to need it - thank God it is here and so close.

So far, none of our September appointments have been rearranged, yet! We don't know when surgery will be just yet - late September or early October and we are having a sleep study on Ocober 26th, but that is as consolidated as we could get everything. Not too bad. At least I think we are getting most stuff out of the way before winter weather and cold/flu season are really upon us. As long as there is no more evidence of seizures, we shouldn't be seeing neurology again for a long time, if ever. We will see Developmental Peds down here at least once this winter and ofcourse we will see Pediatric Surgery and Pulmonology down here, so hopefully that will take us through the winter? I guess we will find out.

I am trying to get and stay organized. I finally purchased a binder with a different folder for each specialty we are seeing - the doctors' names and phone numbers are on the front of each folder within the binder. Laura and Christine, aren't you proud of me? It all sounds great until I tell this story - I worked for a few hours yesterday and after I got home and changed clothes, I pulled my hair back into a ponytail and realized I had only put on one earring. I guess I was just too busy and distracted to accomplish both. So I was at work all afternoon with just one hoop earring. My hair was down, so hopefully nobody noticed? I know I put the one on in the bedroom, I found the other one in the kitchen....? Don't ask, I don't know.

Appt with Dr. Rouse

We had a check up today with Dr. Rouse. Gabe was weighed - are you ready for this....? 14lbs and 7 oz!!! I looked back at our first check up with Dr. Voyles - that was July 26th and he weighed 10-11. I can't believe he has gained almost 4 lbs since we brought him home! Granted, scales can read a little differently, but that is still huge! (Well, HE is anyway)

Dr. Rouse immediately commented on how great Gabe looks and how well he is holding his head up and smiling these days. The things we parents are proud of ;) We briefly discussed the improvements noted on the sleep study and confirmed that we are going back up for a full night study in mid-late October (I'll have to check the calendar - I've got too many dates running around in my head). We also discussed the Gtube and he seemed to agree with Dr. Stanley (developmental peds) that if he really isn't improving on oral intake (that would be eating) then a Gtube is likely inevitable. He wants to get it done before RSV season hits - since we would be back in the hospital. Soooo...that means end of September/early October. He said he had thought we would wait until Gabe was a year old (and at the end of RSV season) before repairing the hernia, but since he will go to surgery for the feeding tube, then they will repair that at the same time - probably using the same incision for both. We will consult with him again about surgery September 25th. Oh yes, I forgot to mention that there was some confusion about our Neurology appt on October 3rd and we were scheduled with the wrong doctor. Anyway, I got a call on Monday letting me know that appt had been moved to 9-25 so I have been scrambling to get the flexible bronch and the oximetry swallow study moved. I finally got those appts nailed down so our new schedule has us going up to Riley on Monday the 24th for the oximetry study at 3:00 (Indy time) then coming back in the morning at 7:30 for the bronch immediately followed by an EEG and our appointment with Neurology. I was a little frustrated yesterday when I had to work on rescheduling everything (fortunately everyone I talked to was very understanding and as accommodating as they could be) but after talking to Dr. Rouse, it is actually a good thing these appts are all earlier. He'd like to get the results of both the swallow study and the bronch before discussing surgery - this just moves things along faster. So, once again, everything is working out just as it should (and if anybody else tries to move anything again, so help me......!)

Ok, that is it. I got to feeling very "Marth Stewart" as Josh put it (is there a jail joke in there somewhere?) and decided to make a peach pie and then some fresh salsa - I have to quit visiting the farmer's market - and now my kitchen looks like the farmer's market threw up everywhere. Gabe needs a bath too - so gotta go!

Prayer blog

Our family has been so blessed and so fortunate to have all of you praying for us. We have become so much more aware of the power of prayer, and the power of our family and friends when they get together to pray for each other. Others we have asked you to pray for have also improved and are moving forward. I was thinking about this and the impact it has had on us and on others and thought how much more could be done to reach out - or to create a forum for our circle to pray for each other. I know there are other blog pages devoted to prayer, but I wanted a place for all of us to reach each other. I'll include a link to another blog page that will hopefully take off and meet this need for not just our family, but all of our friends and families. I put instructions on how I think this will work the best on the blog page - but this is how I think it should work.

First: email me with your prayer request and I'll cut and paste into a post on the blog - then others can pray for you - and leave comments. Please update those who are praying for you - either by leaving a comment with the original post, or emailing me an update for another post - if you prefer. I am not the most computer savvy around, so if anyone has a better suggestion, let me know!

I can also "invite" others to post, so if you want to be given access to posts - send me your email instead and I will send you an "invitation" to post yourself. Either way will work, I think! It's worth a try, anyway!

Here's my personal email: wittyaud@yahoo.com
Here's the blog: http://circleofprayer.blogspot.com

I tried using "Prayer Warriors", but it was taken.

Little Colts Fan!!!!

Look at him, all engrossed in the game! Well, he looks cute in his jersey anyway. We'll see if he grows up to be a football fan.

I tried posting pictures the way I have been, but it wasn't working - so this is what I figured out.

Woo - hoo Colts!!

Last night, when it was game time, Justin and Kendrick were in bed and Josh had gone to work, so it was just Gabe and I - hangin out, watching the Colts dominate. Really didn't expect the domination thing, by the way. I actually thought it would be pretty close - nice to see our defense off to a good start! Anyway, after getting in some baby exercise, I rewarded Gabe by putting a hand-me-down jersey on him and propping him up to see the game. He enjoyed it, quite naturally. At one point, he was kicking away like crazy - watch out Adam, Gabe may give you some competition! HEY - I just realized something. Since Gabe doesn't have any pericardium around his heart, we figured that means definitely NO football or any other contact sport. But he COULD be a kicker. Hmmmm...something to think about. (yes, this is actually Peggy typing, not Josh) Anyway, while we were sitting there watching the game, I had a moment, just a brief one. It was more a flash of feeling - for a split second I was back at his bedside and he was just a few meager hours old, and we were preparing to say goodbye. It was gone as quick as it came, but I felt strangled and briefly disoriented - almost as if I wasn't sure what was real. Did he really survive? Did we really bring him home? Ofcourse he did and we did and it was silly and strange. Is that normal? Doesn't feel normal!

Ok, there are pics below, or there will be as soon as I get them posted.

New pictures

Scroll down to check em out!

Sorry no update for a few days - assume at this point that no news is good news. We had a pretty uneventful holiday weekend (which is a GOOD thing) and we enjoyed that almost as much as we used to enjoy busy boating/camping Labor Day weekends. Well, we did have a lot of fun at Kentucky lake all those years ago.....Anyway, uneventul = nothing bad happened, so we are happy with that! I accomplished such great things as big grocery store stock up trip, with both older boys in tow and NO announcement such as "clean up on aisle...." you get the idea. They were actually really good and I didn't wind up with TOO many extras in the cart. Josh got some yard stuff done too and I watched all three without the house falling down - and only three cups of coffee (not laced with anything either, aside from hazelnut creamer). The older two got into some minor scrapes, but didn't kill each other and no trips to the ER needed, so we count it as a successful weekend. We did get in some fun things. My longtime friend from Boston was visiting her inlaws in Duboise (near Jasper) and we, along with another longtime friend who now lives in Evansville, all met for dinner and a catch-up session. On Monday the grandparents along with Aunt Brooke watched Gabriel so we could take Justin and Kendrick miniature golfing, which is one of their favorite things to do. It was HOT, but fun. Since we don't get out too much anymore, we'd love to live vicariously through you all. Feel free to chime in a comment on your holiday weekend!

On another note, this morning Josh brought me a book he is currently reading and asked me to read a short excerpt. It is a book my brother Mike recommended, written by Tony Dungy. We are all Dungy fans around here. Not only was he instrumental in delivering the much anticipated and long awaited NFL championship for the Colts, but he did it with class and dignity and none of the "smack talk" and posturing that is frequently so prevalent it a lot of professional sports. But Josh had me read this excerpt b/c it resonated so profoundly with our own recent experiences. I'll type it in here.

Excerpt from "Quiet Strength", written by Tony Dungy.
"In September 2001, we would bring home anoher child, Jade. Lauren felt that Jordan needed someone to play with - somehow I knew that was coming. When it came to adopting another child, we never gave Jordan's medical condition a second thought. Jordan's condition is difficult, but we realized it could just as easily have happened to one of our biological children. Plus, we believe God had a reasoon to send Jordan to us. We hae a variety of resources that help us deal with his needs, especially Lauren's patience and nurturing spirit.
We view Jordan, our son, as a special blessing. We're grateful for our opportunity to impact and shape his young life. In the process, Jordan personally illustrates for us some of the wonders of God and His plan for us. Watching the impact of that single missing gene reminds me how intricately each of us has been designed and created. I am continually amazed at the wonder of God's most complex creation - people. The line between what we consider normal and what we consider special is so fine. So many varied, delicate pieces contribute to the balance and beauty of the whole picture. Just another part of life's journey."

That second paragraph hits home on so many levels. The timing of development with Gabe, something we never thought about at the time, but in that timing something went wrong - just briefly and such a little thing at that particular time - and it had such a huge impact on his potential survival, and will continue to have some sort of impact on the rest of his life. He looks so perfect and can do anything any other baby can do, aside from some minor, temporary issues. But this one thing, this one little thing, could have easily ended his life before it really began. We have been given the gift of a tremendous responsibility. I can't say it any better than Dungy does - each of us have been so intricately designed and "so many varied, delicate pieces contribute to the balance and beauty of the whole picture". I wish I could put words together like that.