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.

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.

Sunday, October 08, 2006

October 7th, 2006. Beau is still having trouble bottling. He's eager and he wants it, then he chokes and coughs and sputters, then gives up and spells. It's so hard to watch your child do that and know you can't do much to help them. As the NICU doctor put it, three weeks ago he wasn't coughing at all, he's making progress. So I'm looking at it that way. He also pulled out his feeding tube for the millionth time on Friday and everyone decided to put him on a complete Ad Lib schedule. This basically means he's not a schedule. He takes what he wants when he wants to take it and he needs to hit his minimum to keep the feeding tube out. He seems happier doing things his way, of course! Plus he seems to be taking more per feed- probably because he's finally knowing what real hunger is. Or maybe it's just his age. I'm just happy he's happy.

On another note we've decided to have him transfered to a closer hospital for him to continue his bottling and stop choking training. This one is only 15 minutes from our house, instead of the 60 minutes it takes to get to his current hospital. We're pretty upset about leaving his nurses that know him. They've known him for almost 19 weeks. That's a long time. But I have to remind myself of what's best for Beau. And I know what's best for him is one person feeding him. I know he'll be happier having us around more often and less stressed out. Has anyone else transfered their babies? Did you feel the same way?

Monday, October 02, 2006

October 2nd, 2006. Beau is a class act! He is currently enjoying wrestling with me over feeding. He must think I'm so much fun. He acts like he wants the bottle, he leans towards it and even sucks on it for a bit. Then he pushes it away and decides his hands look like better food! Or better yet he chews on the nipple! Yes, chews.... maybe he's trying to tell me something... hmmm. He keeps looking up at me with a grin. He's so content and happy even when he's busy playing with me during feeding time. It's really great to look down at your baby and see him happy and healthy smiling back at you after everything he's been through.

He's also become quite the social butterfly! When people walk by talking or lean over to him talking, he looks right at them and becomes VERY interested in thier conversation. He's so sweet and engaging. He loves attention. He wants you to talk to him. He's really a great baby.

Also, he's been taken off of Reglan. The nurse practitioner in the NICU said she was going to take him off of the Pepcid and put him on Prilosec instead. So when I looked up the possible side effects of Reglan, I freaked! If your babies are on Reglan or you know anyone on it, I strongly urge you to research it. Type Reglan side effects into the search bar. Now I research all of his meds. So long story short, the NP had also taken him off of Reglan a day before I requested he be taken off of it. Made me pretty happy!

As far as bottling goes, since he's been taken off of Reglan, he's doing leaps and bounds better! I'm not sure if they are related or not, don't quote me here. I'm simply a VERY happy mom who's little guy has suddenly decided that bottling isn't so bad after all.... once he's done playing with me! So far he takes about 35mL from me before burping and rarely takes more. He'd rather play with me instead! But he did finally take all 80mL from one of his nurses and 50 and 60 mL from his nurse last night. This morning he took about 20 mL before burping and falling fast asleep! I can't help but smile and giggle when he does that. What can I say, when he wants to sleep he sleeps!

I hope this message finds everyone happy and healthy. Please keep up with Beau's story and keep praying for him. You will never know how much a simple prayer or good thought means.