Life in the NICU

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.

Tuesday, November 14, 2006

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
Hope to see you and hear from you there! Take care.

Thursday, November 09, 2006

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.... :)

Thank you to everyone who's prayed for us along the way. I know it's because of you that we are so blessed. Love to all!

Monday, October 30, 2006

October 30th, 2006.

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.

Friday, October 27, 2006

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.

I really can't say enough for the rehab center and its staff. They are so kind and knowledgeable without being know-it-alls. They asked my opinion and about my past knowledge with Beau and they actually listened and implimented what I've said! It's great to feel like you're being validated, like you know something too. I'm not saying that the NICU didn't do that... but this is different. I really like that Beau gets his own room and his own undivided attention from his nurse and all the therapists that see him in the day.

Right now Neill and I are sick. We can't believe it. Neill's had a headache and sniffles for a few days, but last night I woke up with a raging soar throat and nose and I couldn't breath. The odd thing is, the day before I woke up early in the morning and just threw up. No reason to it. And no, it's not the pregnancy. Oh yes, I should add that we are currently expecting our second child. We're 11 weeks along and since December of 05 I've been not pregnant for 9 weeks. Yes it's exciting, no it's not funny, yes we're still in shock! Okay so most times it is really funny.

Wednesday, October 18, 2006

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.

His reflux is so bad that a g-tube won't help. None the less the hospital has placed the NJ tube even though I said I didn't want them to. He's still spelling because he still takes a bottle. He loves to bottle, but when he gets full to a certain point his reflux strikes again and he has a choking spell. Lately they've been bad so the need to get him into rehab has become urgent. I really worry about Beau's spells. Sometimes he really doesn't want to come back and that freaks me out. Then other times he coughs and clears it himself without any bells or whistles going off. The NICU NP has termed him an enigma. He'll do great for a few days then WHAM! we're back at square one.

He's also starting to show signs of oral aversion. I'm also noticing he does it more frequently with certain nurses more than others. Then, again, he'll have his days where he's great with one nurse one day then the next he's aweful with her. I'm at my wit's end. It seems like nothing is really going to help him. The g-tube won't help the reflux but will help with oral aversion as long as I have visiting nurses and early intervention here. The NJ tube works the same way. God I hope we can get into rehab soon. I'm not exactly sure what they're going to do, but I know it's a different approach and that's really what is needed now.

Saturday, October 14, 2006

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.

As of now we're gathering more information on both options. We've been talking to other NICU parents whose children have g-tubes and who've been in rehab hospitals.

I feel like the hospital is no longer beneficial to Beau. Yes, they take care of him when I can not and they have his best interest at heart, but now they've put a tube back down his nose into his belly and whatever he doesn't take by bottle he takes by tube. They're trying to keep him on an every 4 hour schedule and that's fine, but if he's asleep they give him food by tube. I wouldn't be doing that at home. I'd give him his bottle when he wants it and he can take what he wants. Then whatever he hasn't taken for the day, I give to him through the g-tube at night.

I don't think I could handle another 6-8 weeks in a new hospital with new staff who are probably going to tell me he needs a g-tube anyway. I feel like I can work with him at home and slowly get him to take his full amount and wean him off of the g-tube slowly and at his own pace. I need my son home and home is the best place for him. Please keep praying that if he does get the g-tube the operation goes smoothly.

Friday, October 13, 2006

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.

I booked the room yesterday and was all ready to spend the night. So it's about 8 pm and we've had a great day bottling. Now Beau's tired but he's hungry. So I give him the bottle and he downs the first 30 mL in no time. Half way through the next 30 he's chokes. I can't believe it. Three whole days, almost four, and he spells!!! Thankfully all it took was a few pats on the back and he's okay. So a few minutes later and he still wants to eat. He finishes the second 30 mL's without a problem. Then he's still hungry so I give him another 30 and a few pulls into it he chokes again!!! This time he needs more patting but still no nurses assistance. I'm livid. I'm crying and I feel like I can't handle this. Thankfully my husband came to pick me up and just let me cry. He's so great. He always makes me feel better. So now we're just hoping for days with no spells. 5 days and we can go home. 5 days. Please God please, 5 days. Let me get my little boy home and I know it'll be okay.