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.

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