We were both pretty tired last night, so no update! Actually we don't have results from the sleep study yet, so there isn't anything to report yet there. We have an appointment with Dr. Stevens (Riley Pulmonologist) at 12:30 at Deaconess/Riley connection. The respiratory therapist running the study yesterday assured us that Dr. Stevens would certainly have the preliminary results, and possible the full report at our appointment. Gabe did sleep pretty well for the three hour test, so hopefully it is a good and reliable test, whatever the results. He was understandably pretty angry after they got all of the "stuff" on him. If you scroll down to the pictures of the first sleep study, you'll see how wrapped up he was. I'm impressed he could sleep at all! Anyway, he was hollering but we were able to settle him down and he conked out. While he was sleeping, we got a visit from nurse Laura. She was off, but came in to visit us (and probably primarily Gabe). I think he was pretty happy to see her when he woke up! I forgot my camera, so I was bummed not to get a picture of the little reunion. We did wander up to the NICU after all of our appointments were over for a little visit. Everyone told us how good he looked (and chubby!) and continued to back our decision to go home last month. Hopefully we will get through this winter without a trach/vent package, but even if we don't, we still feel good about taking him home without it. It has been a hectic but wonderful month at home as a family and although we have had our challenges, I don't think we would have had a glimmer of normalcy with a trach (beside the fact that we wouldn't even be home yet if we had the trach). I guess my point is (I do have one, every now and then) if the trach happens at some point, at least a portion of his babyhood got to be as close to normal at home as we could make it and we will have that to hold on to and treasure. BUT hopefully it won't be an issue at all ; )

We also had an appointment with developmental Peds, which was pretty good. We met with Dr. Stanley, and she comes to Evansville from time to time, so we should be able to meet with her down here at some point in the future. After a lot of discussion (we were very impressed with the amount of time she spent with us listening and processing our situation) she had some valid recommendations. One was zantac to address the amount of spitting up he still has. Since he is gaining weight VERY well, she wasn't really worried about the nutritional aspects of this issue, but more of an airway/aspiration concern. Another was some oral stimulation suggestions, especially since he seems to have completely lost interest in feeding orally. Because of his respiratory issues, she doesn't really want us to do much to push the oral feeds without a swallow study (which isn't news to us, we know this is an issue). Since we are coming back in October to meet with Neurology, she recommended getting an oximetry study? As it was explained to us, if I understood it correctly, this is a swallow study using pureed foods instead of liquids - since he will be about 4 and a half months old by then. Along with the feeding issue she asked us to seriously think about the Gtube. This would be a feeding tube surgically inserted directly into the stomach. She made some valid points about that, and since he hasn't taken anything significant by mouth in at least two weeks, I think we knew this conversation would be coming at some point. Her logic was if Gabe is really starting some oral aversion, the tube down the throat could be contributing significantly to that and the longer he has something going down his nose and throat, the more he could really dislike swallowing and hence getting nutrition orally. She said most families avoid it as long as possible, but once it becomes a inevitable, they usually wonder why they waited so long. The "pros" would be that it is apparently easier to feed him this way b/c we don't have to keep putting the tube down his nose (which is pretty unpleasant and could also be contributing to a lack of interest in eating) and it would be easier for others to care for him. The ultimate "pro" of going sooner rather than later, if the ng tube is really the reason for his oral aversions at this point, would be a hopefully smoother transition to taking purees and ultimately solids by mouth when he is old enough. This is all my interpretation of what we were told, hopefully I got it right. We will talk to Dr. Rouse Sept. 11th about his perspective on the Gtube and the sooner rather than later theory. By then we will have a better idea of whether or not he is going to do more orally. I think that is it. Isn't that enough?

Ok, we'll try to post more later when we know the results of the sleep study.

Preparing to Return

...but hopefully just for the day this time. Gabe's sleep study is tomorrow, and his first appointment with developmental peds. It's actually a nap study and the results could have a huge impact on what happens next in our little saga. If the CO2 levels are worse (which I would think we would have noticed something dramatically different, so let's really hope not) then we will have to think a lot harder about the trach. Cold and flu season is right around the corner now (hard to believe fall is coming - especially when it has been 90+ degrees for over 24 days) but it is. Actually, it has been in our house. Justin's fever finally broke Saturday, having us heaving a sigh of relief. Unfortunately now he has the runs. Poor guy. He'll probably have to miss tomorrow now too. So far nobody else is showing signs of illness, so we are hoping that Justin was bad enough for all of us (he really had a rough week - I sat up with him for several hours one night b/c he really wanted to throw up, just couldn't). Anyway, we will leave between 5:30 and 6:00 AM tomorrow morning. Don't know when we will have any news, maybe something preliminary tomorrow when we meet with pulmonology here in Evansville.

Well, tomorrow is going to be a long day, so I am going to attempt to get some sleep. I'll try to update tomorrow evening, depending on how late we get home!

Gabe continues to gain weight well. Even after letting him skip a feeding at night, he gained about 6 or 7 ounces this week. He weighed in at 13-5 yesterday. I was hoping it wouldn't be a problem for two reasons - first of all, ofcourse we want to see him continue to gain weight and be healthy, but it is also allowing us to get just a little more sleep! It would have been a real bummer if we had to go back to every three hours at night!

Separately we got bittersweet news yesterday. Josh is being promoted to sergeant, but it means he has to leave the k-9 unit, and give up Brix. It's a great opportunity, that may not come again for years due to a significant number of retiring upper brass right now. The flip side is how much he loves what he is doing now and ofcourse Brix is part of the family, so it will be sad to see him go in a few weeks. This will certainly be a big transition for Josh, and all of us, especially depending on the hours he ultimately winds up working. I have no doubt he will be a great sergeant - he's a good person and a good leader, but I know it was a difficult decision for him and I am sad it was so hard. It is a good thing, but pray for us as we adjust to such a big change.

What a week!

After a hectic weekend, Justin woke up Monday morning with a fever. Didn't show any signs of illness all weekend long, but when I sat next to him on his bed Monday morning, I could feel the heat radiate off of him. It's been flutuating the last three days, even getting as high as 104. We've been keeping him home and away from Gabriel, which fortunately hasn't been tough. Poor guy has felt pretty lousy and hasn't really left his room much at all. So now we are caring for Justin and keep watch out over Gabe and Kendrick, hoping they stay healthy! Gabe has had a little nasal stuffiness for a couple of days we are watching closely, but it seems to be more associated with the reflux (he spits up, and it gets in his nose). I've been checking Gabe's temp pretty regularly again, just as we did in the hospital. He is sleeping well, so hopefully this is nothing. We didn't make it for a weight check today, since Justin and Gabe were both sound asleep at the time I usually take him. By the time they woke up, it was late morning and I didn't want to take Gabe into a potentially busy waiting room. We'll go tomorrow - What's one more day!

In addition to all of this, Mom, Dad and Tim left on Tuesday. Poor Mom said she felt like she was abandoning a sinking ship, but we are managing to stay afloat anyway! Tim has been sick too, so getting him home to heal was in everybody's best interest!

A busy weekend

Was it ever!! Friday we started by going with Grandma Carolyn, Grandpa O and the older boys to Nativity's summer social. The boys had a blast riding rides and eating cotton candy. Daddy was tired, so he volunteered to stay home with Gabriel. Saturday we went for a walk in the neighborhood since it was actually comfortable outside!! There are pictures below of Josh getting everything together so Gabriel could go along. That afternoon, from 4-6, Dad, Tim and I answered phones for the WIKY Riley Telethon. It was pretty slow in the beginning, but picked up towards the end. After that we all went over to Grandma Maggie and Grandpa Mike's house to celebrate Justin's birthday. I can't believe I have a six year old child. I remember taking him home from the hospital - it was raining actually. After what felt like a big fuss of getting him in the door, introducing him to Cosmo, taking a bunch of "welcome home" pictures and then getting him settled into his bassinet, I thought to myself, "now what?". 6 years later and I still say that with him sometimes! Anyway, he got lots of good loot, most of it "Cars" related. I think the favorite is the "real race track" from Grandma and Grandpa Wittmer, but he was also excited about the Cars sheets and the new chapter book from Grandma and Grandma Smith. Aunt Kaci and Uncle Justin actually diverged from the Cars theme with the game Battleship and a ball that pretends to be a frisbee, or something like that. Anyway, he liked it.

Sunday was baptism day. We had everyone (well, a small select group) over to the house for brunch and then went to the cathedral for the baptism. Father Gregory knew we didn't want to bring him to mass and didn't want a crowd around him. There was already a baptism scheduled for right after mass, so he offered to do it a full hour after mass, just so we could avoid a bunch of people. We were so grateful b/c the alternative would probably have been to wait until spring, which would have been ok, but we are glad we didn't need to wait.

This afternoon was pretty much hanging out and relaxing - and eating leftovers!

Visit with Dr. Rouse

We had our first follow-up visit with Dr. Rouse today and it went well. He was really pleased with how Gabriel looked and our report on the past 3 weeks. Gabe has gained approx 2.5 lbs since we left the NICU. He was pleased enough with the weight gain that we now get to let Gabe wake us up for feeding at night! Hopefully we will get a little more sleep tonight, or Gabe may realize he's hungry about a half hour after the missed feeding ;) Guess we'll find out tonight. Dr. Rouse was also happy with Gabe's "social skills". He smiles all the time and "talks" to us too! His scar looks great and his little muscle hernia is the same, no worse. We will have to get that repaired at some time, but not for a few months yet. Oh, Gabe had a little bit of stitch left in his neck from ECMO, which we noticed a couple of weeks ago. Dr. Rouse went ahead and removed it, which Gabe was not too happy about, as I am sure you can imagine. We will see Dr. Rouse again next month in Evansville. They told us today there still isn't a neurologist coming to Evansville, so we will go up there in October. I think that is it. Oh wait. We had a question about Gabe's lack of pericardium, more pertaining to when he gets older and rough housing, etc. Dr. Rouse didn't seem to think that there would be any need to restrict him. His only issue should be if Gabe needs open-heart surgery at some point, so our main job in this aspect will be to educate him about his medical history when he gets old enough to leave home.

Radiothon Complete

...well, at least our part of it. We were really nervous when it actually came time to talk. Hopefully we didn't stumble over our words too badly. While we were sitting there, waiting for our turn to speak, I was watching the ladies waiting to answer the phones. The key word here is waiting. Hopefully the phones will pick up over the lunch hour. If you get a chance and are so inclined, the number to pledge is 1-888-745-3954. We pledged the $15 per month they are asking for. We are so blessed to have such a place so close. There were kids there from all over the world. A three hour drive doesn't seem like so much when you think about that.

It was a neat experience to share his story. The DJ even read part of "Gabriel's Song" on the air. They couldn't play it, but it was special to hear him reading it.