September 25th, 2006. Beau is now taking 45 mL per feed from a bottle instead of the 30 mL he was taking originally. The plan is to keep working him up like that. Today they tried to bump him up to 60 but he spit up and they decided to keep him where he is for a few days more.

Beau has decided he doesn't want to take a bottle from me. He's taken one for me since his swallow study without a problem. Then he fought me tooth and nail the other night, and tonight he kept spitting it out and crying and arching away from me and the bottle. I'm so upset. It was everything I could do to not cry. I feel like my baby doesn't like me. I wonder if he's just had too many bad experiences bottling with me to feel safe. I hate the idea that my little boy may never take a bottle from me. I feel like he'll just keep fighting me on it again and again. It makes me want to cry now. Not only did he refuse a bottle from me and throw a big fuss, but he spelled on top of that. Just choked and spelled. I feel like it's my fault. I feel like my little boy doesn't like me. I feel like he doesn't feel safe with me.

Everyone keeps telling me to focus on the good and where he's been and what he's done so far. Don't get me wrong. I know a lot of my blogs are sad and depressing, but I can't seem to focus on where he's come from when he's so close to going home. It almost seems like he doesn't want to come home. I know I'm just overly emotional. And yes, Beau has come so far when all the odds were stacked against him. Caucasion premature boys do the worst in the NICU. He is a miracle. It's amazing he's doing so well after how small he was. He's quadrupled his weight and gained 5 1/4 inches. I just get to feeling hopeless, like he's never going to come home. I know one day I'll look back on all of this and say, "God, that sucked." Living in it sucks though. I wouldn't wish this on anyone. Tonight I pray for all the premature babies in the world. I pray for their health and their safety and I pray they will go home to their loving parents where they can live like normal babies. Please pray too.

September 21st, 2006. Here's some new pictures of Beau. He's right out of the bath, then trying to eat his fingers, and finally sitting up like a big boy in my boppy! Beau's swallow study went beautifully today!!! He did it he really did it! Now he's taking thickened feeds from a Dr Brown's bottle. They add "Thicken Up" to my breast milk to make it easier to swallow. He is allowed to bottle feed one ounce per feed for no more than 5-10 minutes per feed and then work him up from there. It's a lot of work to drink thickened feeds and they don't want him to get too tired out. So far today he's drank from a bottle three times. Once for the study which was a huge success, once during his 5 pm feed and once during his 9 pm feed. He did great during the test and the 5 pm, but then desat'ed for his 9 pm. His nurse thinks it was because he was a little tired and will try him again at his next feed.

In order to take him home he needs to bottle feed all of his meals. Currently he's 40-60 bottling. I'm hoping he'll keep making progress. I worry about him so much. It's heartbreaking to leave him behind day in and day out. Right now he's taking 74 mL or 2 1/2 ounces per feed 6 times a day. He's a monster at 7 pounds and 19 inches long! When we were in the waiting room waiting for his swallow study reports this woman asked me how old he was. When I replied he was 3 months she gave me a funny look and said, "He's small for 3 months." I honestly couldn't believe it. And of course I had to go into the whole thing of he's a preemie etc. I felt like saying, "Look lady, he's big for his people!" hehehe

Take care everyone and thank you for the prayers and good thoughts. Please keep them coming!

September 15th, 2006. Beau did better this swallow study! He aspirated and spelled right away with the thin liquid and I almost had a heart attack. One of the people doing the study was just holding him and asking his nurse to hook up the oxygen. No patting his back or stimulating him to breath. I was about 1/2 a second from freaking out and grabbing him from her. Fortunately, it wasn't a bad spell and his nurse was there and took care of him. When they tried him on the thick liquid there was a noticable difference. He slightly aspirated, but didn't seem to be too affected by it. He didn't spell and in all honesty, I couldn't tell he was aspirating. One of the researchers showed me but I still didn't see it. He did say it was only a little bit. So now we wait once more week then try him again and see where he's at.

In the mean time he's been taken off of the Diuril (one of the diaretics) and also his potassium suppliment. He may go back on the potassium depending on how tomorrow's labs come back. I'm definitely happy to get him off at least one medication. It's going to be complicated enough without more medicines.

Please keep praying for Beau. Your comments and good thoughts me so much to us. Take care.

September 13th, 2006. So far so good with Beau. He has an eye test today. Tomorow he'll have another barium swallow study. I'm happy I'll be able to be there with him for this one. I missed the first one last week because I had a cold. I missed him so much the two days I couldn't come in! Should he coordinate himself during this study (which he probably won't), they'll probably put him on thicker milk and try bottling again. Should he not coordinate himself this time (which will probably be the case) then they'll want to wait another week or two before testing again. The worst part is knowing there's nothing I can do to help him with this. He's all on his own. I pray to God everyday. I ask him to help my little boy. I ask him to help him coordinate himself. I ask him to show him what to do.

Now we're really starting to see his personality come through. He's not interested in lying in his crib. He wants to be held or sat up. He's also becoming less interested in lying in the crook of my arm and would rather be upright against my chest. He's so funny. He pushes himself up and looks all around before cuddling into me. It's so sweet to feel your child cuddle you and love you back. He's absolutely amazing. I have a feeling we won't get much use out of his crib once he comes home. I'm sure I'll be using the sling rider a lot more than I planned to.

September 10th, 2006. Now that they're not bottling Beau, there's not too much to say until his follow up swallow study on Thursday. So I will tell you all that he's doing great! He's still spelling from the reflux, but most are becoming self resolved. This means he's learning how to deal with it himself. That's VERY good and another step towards him growing towards the things a full term baby would do. He's sleeping in between his feeds and wakes up with a voracious appetite. He's also learned that his pacifier doesn't deliver milk... and he spits it out. He definitely wants a bottle. He just has to get the coordination down. Please keep praying for this and Thursday's swallow study and please, enjoy the pics :).

September 7th, 2006. Beau had his eye exam and hearing test yesterday. He did great on both! His eye test said his ROP is regressing, meaning it's getting better. His hearing test came back great too! I'm very happy about this. One less thing for him to deal with.

As for bottling it's not such good news. He had a swallow study done today, even though he's only 38 weeks gestational age. They usually wait until they reach full term. So they tested him with thin milk and he aspirated. So then they tested him with thicker milk and he aspirated again. Aspirate means he's not swalling properly, instead it's going into his lungs, not his stomach. Usually babies have to wait two weeks to try bottling again after a swallow study, but Beau only has to wait one week. So they'll try him again next Thursday. At first his doctor said she had every reason to think he'll do better next week, then she said he might not. I understand they have to tell us the good and the bad. She also said that it's totally expected for white, preemie boys who've been through everything Beau's been through and it's expected that they won't go home until they are 42-44 weeks old. Grrrrreat!

I have to tell you all, that I wouldn't wish this on my worst enemy. This NICU experience sucks. I'm constantly scared, worried, frustrated, and so thankful and in love with the little baby I spend time with everyday. I wish I could focus on what he's been through and not what's ahead, but honestly, I can't help it. I want him home, I really do. Yes, I know he isn't ready to be home with his feeding/spelling issues.... but I'm sure all you NICU parents out there who may be reading this completely understand. So please, let's pray and pray hard and hope for miracles to happen. I don't think I can handle the NICU for much longer.

September 3rd, 2006. Beau is good. Still learning how to bottle. He spells almost everytime. He usually drinks 20 or so mL with breathing breaks inbetween. Then chokes and has a big spell. It's frustrating to watch. I am having the hardest time accepting that I can't do it for him. I so wish I could give him a piece of my brain or pass it on or show him how to do it. This is the hardest part of the journey thus far. We are so close to leaving. The nurses keep saying, "When he goes home" and everyone asks or says, "He'll be home soon." I just wish I knew when. Most of you reading this blog know I really don't have a lot of patience, especially in hurry-up-and-wait situations. Okay enough.

Now for the good stuff. When he doesn't spell, he's very organized when he takes a bottle and he definitely wants it.... bad! He's so funny leaning forward to the bottle or rooting his head to the side looking for it, mouth wide open. And when he gets impatient he starts sucking the air and smacking his lips. He's too funny. Also, he's come off the the oxygen and has been off for 4 days now! He's now waking up hungry before his feeds and often needs burping. He's awake and calm longer and longer now. I love leaning down to him and resting my head on the side of his bed. He looks at me with big, wonderous eyes and tries reaching for me. So far he's been able to grab my mouth and nose once he fingures out the depth perception. He's also mastered the art of huge, stinky, explosive poops. You all might me laughing right now, but I assure you it only gets better. Yesterday our little man hadn't pooped for about 24 hours and his nurse had no sooner called down to the pharmacy for a suppository that Beau gave a push and pooped very loud and wet sounding into his diaper. Although we giggled, we didn't mind too much seeing as it was time to change him anyhow. I assure you, the smell hit us before I even opened the diaper. So here are Neill and I trying to clean the giant amount of poop off of him when I say, forget it. I grab the dirty diaper, which is full up to his back, and wipe him as I take it off him. Then I hold his legs up and wipe him off. At this point he farts so loud that I jump back thinking he's going to poop, plus it scared me a little- wasn't expecting it and all... I know you all are laughing whole heartedly right about now! So Neill laughs at me for being such a girl about a fart when I grab Beau's legs again and reach across his bed to get a fresh diaper and he pushes, and a HUGE stream of projectile yellow brown poop squirts from all 5 lbs 11 ounces of him. He hit the end of his crib, all across it, and onto the floor 5 feet away. For all of you that might think 5 feet is a little too far for poop to fly, let me assure you we measured it. It's 5 feet. Now I'm laughing hysterically because there's nothing else I can do. Meanwhile Beau is the happiest he's been all day just calm and looking around. Neill is trying to get me to help him clean it up, nurses are coming over to survery the damages and I'm still laughing hysterically. Later, after a bath and a new bed, and 15 minutes of clean up that turned into, "Just throw it away," Neill tells me about the poop on my sleeve. Yes, I was caught in the crossfire. My beautiful little boy has had his first poop on me and my husband is still telling me about his quick jump back that saved his shirt. Now I'm hoping all of you might take a few minutes out of your laughter and fits of giggles to keep praying for Beau's bottling. Thank you!