Hi everyone! I've finally had a minute and made the new blog. I've got new pictures up and everything! The new site is www.beauathome.blogspot.com
Hope to see you and hear from you there! Take care.
This is the journal of our life in the NICU with our son born at 23 6/7 weeks gestation. Beau was 1 pound 13 ounces and 13 3/4" long.
Hi everyone! I've finally had a minute and made the new blog. I've got new pictures up and everything! The new site is www.beauathome.blogspot.com
November 9th, 2006. BEAU CAME HOME TODAY!!!! I'll post new pictures and a link to the new blog as soon as I we settle in. Currently he's busy exercising his lungs.... :)
I've had so many requests for new pictures of Beau I could hardly keep up! When I finally went through the camera I realized I had 70 new pictures of him and they dated back to September!!! God I feel like a terrible person when I do that!
Beau is doing great in rehab. I don't know what those people are doing exactly, but it seems like magic. Maybe it's age or maybe it's something else, but I can hardly believe he's the same baby.
I hope everyone's doing great! Please keep praying, they really work! I'd like to extend a special pray of my own to Aiden who's going in for g-tube surgery very soon. Aiden, we love you and we know you'll do great. Then you can go home to mommy and daddy and flourish.
October 26th, 2006. Beau is actually doing really great at rehab. His first day there he pulled out his NJ tube and I had to give the doctor permission to put in an NG tube. These are tubes that go through his nose and into his stomach to "top up" his feeds incase he doesn't take it all by bottle. Then he ripped that one off yesterday! Just yanked it right off his face. It sounded like velcro.
October 18th, 2006. Day 142 in the NICU. We went to tour the second option for rehab and absolutely loved it! We're definitely going to have him transfered there as soon as they have a bed. We feel really comfortable there and I feel like they're very capable and willing to work with Beau. They also have a higher success rate with babies like him.
October 14th, 2006. Okay so we have two choices for Beau. The first is to give him a g-tube and take him home where we can work on making sure he gets all the volume he needs per day. The other is to send him to a rehab hospital where he spends the next 6-8 weeks with a tube down his nose into his belly where they are going to try to get him to take all his volume, but may turn to us at any point and say he needs a g-tube anyway.
October 13th, 2006. Well, we were close to going home, until Beau spelled twice last night. Originally we were going to transfer him to a closer hospital so he could keep working on bottling. We were waiting for a bed to open sometime this week. Instead, a nurse asked us what the purpose of moving him was if he's so close to going home. This knocked me over. I had no idea he was close to going home. So I said, well okay we don't have to move him. She said that would be best since he's probably going to go home some time this weekend. They said all they needed was me to come in for a few days and stay all day and night to show I can feed him adequately. So while I'm at the hospital yesterday, the NP hits me with her concerns for Beau's reflux. Yes, I know he refluxes, but I also know it's getting better and he's not spelling because of it anymore. She thinks his spells are from reflux, I don't agree since all of his spells seem to be while he's feeding. Nine times out of ten it's because he's distracted by something else and doesn't pay attention to his bottling. All it takes is a loud laugh or someone walking by and he stops being coordinated and chokes. That's when he spells. In fact, he's been coughing and clearing his refluxed food over the last 2 weeks and not choking on it. Anyways, she's asked the GI team too come over and have a look at him and give her their recommendation. I'm floored by this because she's mentioning G-tubes and GI studies that stick a camera down my son's throat to look at his stomach. I'm paniced and I'm very upset since it's been mentioned in the doctor's note a full day before it's been mentioned to me. This is the third time I've had to remind the hospital that I need to be made aware of these things first! So the doctor comes over and spends two minutes with Beau before he makes his recommendations with his team. Before that one of his team was walking around talking to nurses that've had Beau asking their opinions on his feeding, with no regard to how long ago they've fed him. Then she's asking me my opinion and she doesn't give me a chance to finish at all! She kept cutting me off before I got to answer. So anyways, this doctor looks at Beau and taps on his belly and after a full two minutes tells us he recommends increasing his Prilosec, adding more thickener to his feeds, and sticking a feeding tube down into my son's upper intestine to stop his reflux from reaching his mouth. WHAT!!! Are you kidding me?!?!? He just got rid of his feeding tube and he's so much happier. So I finally have had enough and I talk to the NP about my feelings. I say I do not want anything stuck inside my son and I will not authorize it or a G-tube. He hadn't spelled in three days and I had high hopes he was growing out of this. Then she tells me they are only recommendations and for now she's only going to increase his Prilosec and give him a swallow study that follows the food past his mouth. She also says she's more concerned for the amount he needs to take to go home feeding from a bottle. That's fine with me. Personally, I think Beau needs to do things in his own time. He's never done well on someone else's schedule.