He's Home!

At about 4:45pm this afternoon, we walked through the door to our apartment with our precious little nearly-six-month-old baby boy! We have a feeding pump, apnea monitor, six medications, about a truckload of odd end accessories, orders and scrips for numerous follow-up appointments and labs..... and a chubby little bundle of joy! So far, he seems most impressed with the ceiling fan in our bedroom (where his cradle is set up) and he seems quite confused by everyone being SO tall! He's used to seeing people just a couple of feet above him from the crib but the cradle is low to the ground and we're all giants from that perspective.

I wonder how long it will take for him to realize that this is home. He probably still expects to see his nurses come bedside any time. I've got to admit, it would be nice if a nurse came with all the other equipment but I'm certain I can handle the different aspects of his care just fine. And, of course, I will have his Nana Cain helping me out some mornings and his Daddy helping at night and on weekends.

We're letting Hannah sleep through to the end of her nap before springing her on him. A cranky Hannah is much harder to control than a well-rested Hannah. We're going to have to go over his care carefully with her, making sure that she understands fully that she is not to touch Kyle without supervision and only really gentle touches then, and she is not to touch any of the nifty gadgets that come with him. One demonstration of the loud noise from the apnea monitor should get that idea across to her, though.

Bulletin for all those who would like to visit Kyle....

I am going to be strict about visitors. All visitors MUST wash their hands thoroughly on arrival and after any trips to the bathroom regardless of whether or not they will be actually holding Kyle.

Obviously, we don't want too much excitement for Kyle so I will also have to limit how much he is passed around. Visitors will likely get to hold him but no passing him off every 15 minutes. He's very social and loves people and loves being snuggled but he also has very bad reflux and too much movement will result in clothes drenched in "recycled" formula on both Kyle and whomever is holding him - kind of like a really disgustingly wet and messy game of "hot potato". So be considerate of Kyle's tummy and of any visitor who might end up holding him at the end of the line.

I will also expect that anyone feeling sick will not visit until they are feeling better for at least a full day. Children and adults alike with runny noses, fevers or coughing (even a small amount) will be asked not to visit for at least 24 hours after these symptoms subside. These are pretty much common sense rules but I want to be clear. Please remember that Kyle had a very rocky start and is not completely out of danger.

Also, for those of you who smoke.... As always, I ask that there be no smoking in our home. This is not a change. But I would also ask that any smokers wear a smock of some sort over their clothes (I will find something to serve this purpose) since a large amount of cigarette smoke can be carried in on clothing and since his lungs are especially sensitive.

Keeping us in suspense!

Well, a lot has happened since my last blog. Monday night I went in to get kind of a "crash course" in G-tube feeding. They showed me how to hook up the feeding tube, put in his medications and clean the G-tube site. The cleaning of the site was definitely the most aggressive part of the whole process and therefore the scariest part but it wasn't too bad and it only needs to be done once a day usually. They went over how to recognize symptoms of a problem with the G-tube (skin warm around the site, excessive redness, strange color leakage, excessive leakage, etc.) It was a lot of information to take in but most of it was pretty much common sense. All the nurses seem to really like Kyle and who wouldn't? He's turned into a pudgy little charmer (I've started calling him "Prince Charming of NICU"). He has dimpled little knees and elbows and smiles at anyone who says hi to him.




Tuesday morning Chris and I went in to All Children's for training on how to use the home monitor and feeding pump equipment for when we go home. The representative from Pediatric Health Choice demonstrated how to set up, use and maintain the home monitor system and the feeding pump. They're both very easy-to-use machines and very user-friendly. Our digital camera is more complex than these machines. After the training, Chris and I got some lunch before getting trained on G-tube care. For me, it was just a refresher from the night before and Chris always retains information well so we were confident after the training that we were ready to do the G-tube care ourselves.

The staff scheduled use of the "Mom's Rooming In Room" for me that night and Chris and I headed home to get things in order before that night. On the way home, we were able to pick up the Kia from my uncle's shop (the timing belt had snapped back on New Year's Eve and my uncle had been repairing it).

Later that night, I went to the NICU quite excited because this was one of the final steps in getting our boy home. They brought his crib into the rooming in room and we started to hook him up to the home monitor. We had some challenges with the home monitor because it apparently wasn't compatible with their remote system but they finally said that it ws loud enough that they could hear it from the other room anyway so it was okay. That's for sure. It's louder than a fire alarm! A little while later, the monitor started going off. The lights said that Kyle had an apneatic episode (breaths slower than 20/minute) but he was breathing fine. It went off several more times and we didn't figure out for quite a while that the leads (the pads that go on his chest) were just too close together.

A little while later, the security guard came to get me because someone had reported that our Kia had the door wide open. I panicked a little because I had left the laptop in the back and I felt certain that I had locked the door. When I got to the car, it was fine and the laptop was still in there so I guess the car door must have popped back open after I walked away. I haven't quite gotten the hang of the locks on this car. It's got one of those locks where you have to lift the handle while you close the door, or it comes unlocked. I like my Civics locks because you have to lock them with the key from the outside or it won't lock. It's a great safeguard against locking your keys in the car!

Anyway, the night with Kyle went great. He slept most of the night. I didn't get as much sleep as he did because I was so excited.


Unfortunately, the next morning the nurse practitioner brought bad news. Just when we were about to get the go-ahead to take Kyle home, they found out that he was scheduled for surgery to repair his hernia for January 17th! The nurse practitioner said that she would try to work something else out so we wouldn't have to bring him back for surgery just a week after discharge. Well, she worked it out so that his surgery was today instead. In some ways, that's good because they prefer to do the procedure before discharge and they were able to do his circumsician at the same time. But it means that the expected discharge date has been pushed back to Monday. Even then, it's not a definite. It all depends on how well he recovers from this surgery and gets back on feedings. We'll just take what we can get.

At least the apartment's ready for him to come home. This morning before I headed out for the hospital, Hannah was rocking the cradle and saying "I'm rocking my baby brother" and "Kyle coming home?". She is so excited that he'll be coming home. I wonder if she'll still like the idea after he comes home.

I'll post new pictures as soon as I get a chance... for now, I'm using the All Children's Family Waiting Room computer while I wait for Kyle to come out of recovery.

A Good Cry

In case this website isn't enough of a tear-jerker....

A couple of days ago, I was scanning through MySpace music sites looking up songs of artists I knew. I ran across Mark Schultz, a Christian music artist I hadn't heard for quite a few years. So long, in fact, that I had forgotten one of the songs he was most popular for... "He's My Son". For a good cry, "view my complete profile" and listen to the audio clip.

Then, yesterday, while Kyle was in surgery for the g tube, I went by the chaplain's office at the hospital to make sure he had gotten the bell ornament I had left for him. Another chaplain was there and we talked for a little bit about Kyle's progress but a little way into the conversation, it hit me like a wave... I was in the chaplain's office for the first time since saying goodbye to Eric. As I looked around, I broke into tears so suddenly that it surprised me almost as much as it did the chaplain.

Lately, I've had times when I feel like I'm supposed to be more of a wreck than I am. I know that it's a good thing that I've been able to keep it together and focus on Kyle and Hannah and life. There was a part of me that wanted me to just curl up and stop existing after we lost Eric. Sometimes I feel like I've adjusted too well to the loss - like I should be more broken than I am - like I couldn't have cared that much if I can just go on with life without crying every day. But the last couple of days have made me realize how much I do care and how much I do feel the loss. I just have to live around those moments that hit me like a brick. I have to be able to make it through a day without breaking down. Too many people need me to be strong and so I am strong for them and by being strong for them, I'm strong for Eric.

It really helps that I've had friends and family who've been so supportive during all that we've been through and I've been able to talk about things and not let Eric just be forgotten. Thank you all.

G-Tube

Yesterday morning, Kyle had surgery to put in a "G tube", a kind of feeding tube that goes into the abdomen instead of the nose. They brought him to the downstairs NICU and did the procedure bedside. He did very well and is now back to NICU3 until discharge. The nurse practitioner, Stephanie, says that we'll see how he does over the weekend and if all goes well, Kyle will come home early next week.

Here's a video of Kyle shortly before his surgery yesterday...

Baby Boy

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and here's a picture of the g tube just after it was put in...