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.