Life in the NICU

2006-11-14T10:23:00.000-08:00

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.

2006-11-09T19:07:00.000-08:00

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!

2006-10-30T18:26:00.000-08:00

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.

2006-10-27T18:52:00.000-07:00

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.

2006-10-18T09:22:00.000-07:00

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.

2006-10-14T08:47:00.000-07:00

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.

2006-10-13T06:32:00.000-07:00

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.

2006-10-08T11:31:00.000-07:00

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?

2006-10-02T07:20:00.000-07:00

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.

2006-09-25T20:14:00.000-07:00

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.

2006-09-21T20:10:00.000-07:00

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!

2006-09-15T20:36:00.000-07:00

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.

2006-09-13T07:45:00.000-07:00

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.

2006-09-10T07:46:00.000-07:00

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 :).

2006-09-07T18:02:00.000-07:00

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.

2006-09-03T08:14:00.000-07:00

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!

2006-08-29T19:26:00.000-07:00

August 29th, 2006. We have good news about Beau, but frustrating news also. His 90 day head ultrasound came back as normal. Meaning, they can't tell he had a hemorage at all! Also, they still aren't able to feel his hernia and he may not have to have that surgery at all. Tomorrow he has his eye exam. Today Beau took a bottle for the first time in a week. He was banned from any bottle feeding by the NP in the NICU. He did GREAT for the first two tries. Then he didn't feel like breathing for the third, and for the fourth try he had a very nasty spell after he choked. I feel like I'm going insane with the waiting. I have no patience anyhow, but this is excruciatingly painful. I can't help him! I can't do it for him. It's driving me crazy. He does so great, but then he pulls a complete 180 to the frustration of his parents and his NICU team. Everyone says it'll be slow progress and he did really well. I wish I felt the same way. I'm too used to seeing other babies in the NICU take bottles like champs. I get so jealous of full term babies that go home in 2 days with no issues. Tomorrow he will be three months old. He's thirteen weeks old today. And tomorrow he'll start his 37th week of gestational age (which is the week pregnant I would have been). Please, please, please... pray. Pray often and pray hard for God to help my little boy overcome his immaturity. If only he could get the hang of suck, swallow, breathe consistently. Please God, please. Send your angels to help my little boy. Keep him safe and healthy. Please let me take him home on time with no issues. Please God, keep my little boy safe and healthy.

2006-08-24T05:48:00.000-07:00

August 24th, 2006. Beau is doing well. Making slow progress towards drinking from a bottle and stopping his spells. He's having more and more days where he doesn't have any, then he'll have 2-5. It's really frustrating, but the hospital says it's all about stopping his reflux and him getting older. Meaning, his reflux makes him spell because it hurts and all of it boils down to immaturity.

Currently he's 86 days old, 36 weeks gestational age, and 5 pounds 2 ounces. I'm really hoping his spells will continue to decrease until there are none. He took 20 mL from a bottle for me yesterday for the very first time with not spells or desats. (Desats are drops in his blood oxygen level)

He had his follow up eye exam for plus disease yesterday. Thankfully they've found none this week. So YAY!! No surgery this week at least. We'll see what happens next week. He still has to have his hernia surgery, but that won't be for a few more weeks.

Right now it's hard to keep my spirits up. We're so close to going home, but so far away. He's on the smallest amount of oxygen you can get from a low flow nasal canula for 3 days now. He's strong and meets the weight requirement for a car seat. But those spells and the bottling and the hernia surgery are holding us up. Sometimes I wish I could show him what to do. I wish I could give him my knowledge on it, tell his little body what to do. I know it's rediculous, but I want to do it for him. Babies don't belong in hospitals. They belong at home with their parents. Please please please, keep praying for him.

2006-08-21T21:29:00.000-07:00

August 21st, 2006. I'm not going to say too much because everytime I do, even just to update, I jinx it. Instead I'm going to say he's on the right path and doesn't he look so cute?!

Thank you for the prayers and please keep them coming.

2006-08-19T05:46:00.000-07:00

August 19th, 2006. Beau isn't doing so well on a bottle anymore. Two nurses tried him at bottle yesterday and he choked with each one. They also discovered he was carrying extra fluid and are adding a different diaretic to his meds list. He'll be getting lasix two to three times a week until he no longer needs it. Originally his nurse wanted to wait a week to try him again at bottle, but his doctor says give him a few days and if he's still keeping the fluid off, try again. I think he was just stressed out from the extra fluid. So we'll see how this is going to go in a few days! Of course I'm anxious and stressed and frustrated and really at my breaking point.

Plus, we'll find out about his eyes on Wednesday and whether he has to have laser surgery or not. I'm nervous. On one hand I don't want him to need to have it, on the other I just want it over with. Also his hernia surgery will be coming up in the next few weeks. AND!!! His nurse found a small piece of nylon sticking out of his PDA surgery scar that his skin grew over. They removed it and it didn't cause him any problems, but no... that's really not cool.

On another note I need to rant right now... I've really had enough of the NICU- and I'm sorry to all of you nurses out there who are or may read this, but if one more nurse tells me about my son or gives me an attitude I may flip. Just this morning I spoke to his nurse, who's never had him before, and merrily warned her about his strong bladder and projectile poop and she gave me a flippin attitude! She goes all silent and I can just hear her raising her eyebrows and thinking I don't trust her! I hate this, some nurses appreciate it and other resent it. Some ask our opinion and others tell us theirs. Some acknowledge that we're his parents and have known him for almost three months now where as others try to tell us about our son. You've got to be kidding me right! I think they should all wear badges that tell you their personality. "Doesn't take kindly to poop warnings." "Won't listen to a word you say." "Won't validate you as parents." "Think you know your child better than I do." "Understand you've been here for a long time." "Tell me your suggestions." "Think your suggestions are you telling me how to do my job." I think that would simplify things so I don't insult a nurse by warning her that Beau could potentially poop all over her. Forgive me for trying to help!

Okay now that I'm done ranting... please everyone- pray for Beau to learn to bottle feed, stop having spells, and come home before his due date... for the nurses sake.

2006-08-17T06:56:00.000-07:00

August 17th, 2006. Where do I start? Okay first of all Beau is doing great when he's not spelling. He should be outgrowing his spells in the next two-ish weeks. His nurses and doctor seem to think he's spelling as often as he does because he has reflux. Now they're trying to find a right combination of anti reflux medications for him. In my opinion they're working, but not all the time.

Beau seems to have developed or started developing "plus disease" in his eyes. This is due to the ROP and prematurity. In a nutshell the vessels at the back of his eye aren't developing properly and can't fix themselves at this point. Therefore he'll need laser surgery as early as next week if they find it's gotten worse since Wednesday. Thankfully they've caught it early and are capable of fixing it. Just think, babies like him would have been blind just 20 years ago! Crazy to think how incredible technology and science is now. As they've told me, the surgery is considered invasive, but has a very high success rate. On one hand statistics like that mean nothing to me at this point, but I can't deny they do comfort sometimes.

His doctor sat down with us Tuesday and we got to express concerns and talk about what's going on and the future for Beau. Everyone will be happy to know that at this point his job is no longer to just stay alive and we don't have to live hour to hour day to day anymore. Now they look at things over one week's time. Beau's job now is to get himself ready to go home. I must say he's doing a GREAT job at that. The requirements for him to go home are:
1. Be comfortable and stable in an open crib - Done
2. Stop spelling - Working on it
3. Weight at least 5 lbs - He's 4 lbs 14 ounces now
4. Get his hernia fixed - Will happen in a few weeks
5. Feed exclusively from a bottle (breast feeding is optional and limited because he needs the extra calories) - Took 13 mL from a bottle yesterday and finally got the hang of beast feeding last night

So as you can see we're on the right track and God willing he'll follow the schedule and come home right around his due date. Please pray for that. Pray for his continued progress. Thank you.

2006-08-12T06:35:00.000-07:00

August 12th, 2006. I know I haven't written for a while.... okay a long while. But I did it with the best of intentions. For my whole life, fate has been tempted by me with everything I say.. so I chose not to jinx Beau's wonderful progress thus far. Now that he's been rock stable and progressing for the last few days I feel it's safe to talk about it.

Beau was moved from the ICU to the intermediate room of the NICU. He's been switched to low flow nasal canula and has been doing well on it since Tuesday. Yesterday we finally got to try breast feeding him and we'll keep up with that daily and try to get him to build up more stamina. He did well though. He took a few drops and suckled a bit, but fell asleep twice. We're planning on trying him with a bottle as soon as he's wide awake enough during the feeding time. He definitely wants it. He's been doing really well taking drops or more of milk directly into his mouth. We usually put his pacifier directly into his mouth afterwards to teach him that milk comes out of the nipple. He's doing great with that. He loves to eat. He's started getting fussy about 45 minutes before a feed and sucks greedily on his pacifier.

Everyone in the NICU is now starting to talk about when Beau comes home. I know it's less than 6 weeks away and 6 weeks is plenty of time for him to outgrow his spells and learn to fully drink from a bottle, but I'm definitly worried. I'm scared he won't outgrow his spells. I know with patience and pratice he'll eventually take to a bottle without a problem and I know he's growing like a weed now- but those spells SUCK! I hate them. Granted he can pull himself out of some of them without anyone's help, but they are still scary when they've turned up his oxygen and rubbed his back and his heartbeat is still low.

I'm starting to feel really rushed and unprepared. We're having meet-and-greets with a few local pediatricians to choose his primary. Sometimes the hospital makes me feel like we should have done that weeks ago. We're trying to get his room together and I feel all over the place with that. His crib is on delivery and should be here by the 5th. We're trying to sort out the changing table. I just ordered the video monitor yesterday and that should be here within two weeks. I know we're on the right track... but I haven't a clue what's going on and I feel scattered.

In the mean time the hospital has set criteria for Beau to go home and also a spell count. He's currently 4 lbs 8 ounces and needs to gain 8 more ounces to go home. He also needs to stop having spells for 5 straight days and learn to drink from a bottle. Please everyone pray for him. I pray to God that he won't have those spells anymore. He's got less than 6 weeks left until his due date and I'd really like to take my little boy home at that point, so please everyone, pray for him. I really think prayers produce miracles.

2006-08-05T08:34:00.000-07:00

August 5th, 2006. Beau has been on nasal canula (again) for 23 hours. So far, he's doing pretty well. He seems MUCH more comfortable! I'm happy to see him just sleep and relax for a change. You'll also notice his fancy new digs! He's so cute in that crib. A real crib! I'm so excited and happy for him.

Hey Bethany! How do you think he looks in his outfit you got him? I love it!

I really don't want to jinx it by saying anymore. Please pray for him.

2006-08-05T08:32:00.000-07:00

August 3rd, 2006. Beau is doing well. He got a bath tonight. He was really puffy with extra fluid for a few days but has not shed all 115 grams of it. That's a big loss. So he's now 3 pounds 14 ounces roughly. Beau has also developed a common preemie eye problem called ROP. This is where the blood vessels don't grow correctly in the eye. His first eye exam came back as immature, meaning he hadn't developed ROP. The second one two weeks later said he had grade one ROP. Now he gets eye exams every week and the one he had today shows he now has a grade two ROP. Although his nurses assure me that it'll get worse before it gets better and he's really not that bad right now, I'm still freaked out. I really don't want my little boy to have to go through anything else. The nurses and doctors say 85% of preemies with ROP resolve it on their own around weeks 38-40. 15% need lazer or corrective surgery. This could or could not effect his sight. We just have to wait and see... which sucks. On another note, Beau didn't do so well with his nasal canula trial. He lasted 2 hours. I'm not really happy about that. They trialed him when he was full of fluid. Of course he's not going to do well! He's got fluid in his lungs. If they had waited to trial him the next day he'd probably still have failed, but would have been on for longer. Instead they decided to trial him the night before and as I've already said... full of fluid. I understand why they wanted to do it earlier, but it seems to me that it wasn't a fair trial. The plan is to give him a few days to recover then trial him again. I almost feel like they're rushing him. My prediction is Beau will flip back and forth from CPAP to nasal canula until he's gotten the hang of breathing more on his own. He does really well off of CPAP as long as his bag oxygen is next to his face, but his CPAP pressure is the same as nasal canula pressure anyway. Part of me knows he can do it, but part of me says to give him more time. Then there's another part of me that's frustrated and confused and unsure of the future and just wants to throw a temper tantrum. I can assure you, if I ever did have a temper tantrum it wouldn't be pretty. Please keep praying for Beau's healthy and my sanity. You have no idea how much it means.

2006-07-31T18:18:00.000-07:00

July 31st, 2006. Today we have good news on Beau. His cranial hemorrage has resolved itself and there are no traces of it on ultrasound! Also... The doctors are going to try him on a high flow nasal canula tomorrow and see how he does. He gets tired off of CPAP after 20-30 minutes so I'm expecting he'll hang out on nasal canula for a while then go back onto CPAP. At least they're not as invasive as the vent and it's easier on him. Besides my expectations... I'm really hoping and praying he surprises us all by not needing to go back on CPAP. Should he do well on the nasal canula, they'll try bottle feeding him in a few weeks. I'm excited!

On another note, his doctors have taken him off of the second diaretic and upped the dose of his Diarel- which is also a diaretic. They took him off of the second one because it wasn't sparing his electrolytes like it should. So now they've reduced the sodium supplements but are keeping his potassium supplements the same. He's also begun getting his immunizations- the same a 2 month old full term baby would get. He'll be getting them in stages every few months the same as full term babies also. I'm actually really excited about them- makes me feel like a "normal" mom.

Last but not least, thank you to everyone who's been praying for Beau. Please keep up the amazing work. There isn't a doubt in my mind God has heard us. Now I pray he stays on the nasal canula.

2006-07-29T21:30:00.000-07:00

July 28th, 2006. HAPPY TWO MONTHS OLD BEAU!!!!

Yesterday his doctors reduced his CPAP pressure to 6. 6 and 5 are the lowest pressures babies are put on before being graduated to the high flow nasal canula. The nasal canula is what you often see on people with breathing problems that delivers oxygen through the nose. The high flow delivers some pressure but not much, while the low flow delivers just oxygen. Now he may or may not be able to handle the nasal canula and may have to go back to the CPAP or he may flip back and forth for a while or he may do great on it and never see the CPAP again. I think we all know what I'm routing for. Of course, this little upgrade all depends on how he does over the weekend and what the new rotating doctor thinks.

Should he switch to the nasal canula, he should be able to try feeding from a bottle in the next few weeks. In a perfect world he'll get off the CPAP and onto the nasal canula in the next two weeks. While I'm in this perfect world I'd like him to learn to bottle feed within two weeks of him being off the CPAP, gain two more pounds, pass his car seat tests, and COME HOME!!! I really miss my boy. It's complete agony to not be able to do anything without a nurse's approval.

SOOOO anyways!!! Lets pray for the perfect world shall we? I know I am.

2006-07-26T11:43:00.000-07:00

July 26th, 2006. Today is a good day for Beau. His doctors have decided to let him grow for a while before making any more changes to his CPAP. I'm happy he'll get some time to just sit and be a baby.

He's still hating the CPAP and cries and cries and wriggles out of it. I hate when he cries- I cry with him. I hate not being able to help him and make him feel better. His nurses say I have to remember that his crying is his way of communicating. That is obviously so, but it really doesn't help me feel better about his discomfort. After all, I've never seen a baby cry because they're happy and comfortable.

Beau is now 15 inches long and 3 lbs 4 ounces. He's gaining weight regularly, although some days he does drop or stay the same.

2006-07-24T22:57:00.000-07:00

July 24th, 2006. Yesterday I got to give Beau his first tub bath. He was GREAT! He was really fussy and crying while we got him undressed but calmed right down as soon as he was in the warm water. He absolutely loved it- so did I. He was so cute sitting inside that little tub that seemed huge to him. He did really well. I think his nurse was impressed- God knows I was!

On another note, today Beau had to get a blood transfusion. I almost cried when I saw the IV in his foot. I hate them. They'll probably take it out tomorrow if all goes well and he doesn't need anything else pumped into him. I'm getting really sick of the NICU already. I hate what Beau has to go through. Okay now that I'm stepping off my soap box- Beau is doing good. His oxygen requirements have stayed around 30-40%. He's getting closer to room temperature. I think the next plan is to get him off of CPAP and onto a high pressure nasal canula. That's the tubing that blows oxygen into his nose. At that point he should be able to be moved into an open basinette instead of the isolette. He's so not happy being on CPAP. He cries and cries and there's nothing I can do to take away his discomfort. I often want to cry with him. He'll be 8 weeks tomorrow. I can't wait till he hits 16 and we can get ready to take him home!

Please keep praying for him and his little friend Aiden. And if you wouldn't mind- please pray for me, I need patience.

2006-07-22T00:13:00.000-07:00

July 22nd, 2006. It's 3 am and we've just gotten back from the NICU. Nothing's wrong, we just enjoyed being there with Beau and chatting with Jess. It's so good to have another NICU parent to talk to and bounce ideas off of.

Beau is doing well on CPAP. They've further weened his pressure to 7 from 8. They also reduced his sodium and increased his feeds. Now he's at 25 mill per feed every 3 hours rather than the 20 he was on. So far so good with that. He's finally begun gaining weight again. He shed about 100 grams of water weight over the last 3 days. Today he gained 50 grams. His nurses don't think it's water weight, but true weight from increasing his feeds and calories. Now he's 3 lbs 2 ounces. I'm very proud of him. Now all we have to do is keep praying that he gets a little better everyday.

2006-07-20T06:30:00.000-07:00

July 19th, 2006. I'm writing this, but I'm really afraid I'll jinx it. Beau extubated himself again Monday night. I was really scared as I watched his blood O2 drop to 3 and his heartrate slow down conciderably. I stood there with my hands on him keeping him calm, just like I'd been when we were doing him up, as he rapidly declined. Everyone came over in a flash and bagged him. His vitals rose fast, but he was very still and I was very scared. I still have no idea how I didn't pass out myself right then and there. Okay I think I've said I was very scared enough now. For all of you out there panicing, this blog has a happy ending.

As they were getting ready to re-intubate him, his respitory therapist suggested CPAP. I had moved a few steps from his bed watching them bring him back. The doctors and his primary agreed and all looked at me. I didn't know what to do so I just agreed as they all kept repeating CPAP and that he's old enough now to be able to at least try it. I remember the doctor looking at me and saying, "The worst he could do is fail." I shook my head in agreement and left to the room with Aiden's mom Jess to go pump and calm down. I wouldn't have gotten through it in one piece without her.

When I returned I was a nervous wreck. I sat my his bed for two more hours just to make sure he was okay.

Yesterday I got to spend a whole day with him and half the night. He looked really good and happy. Much more comfortable. His oxygen requirements were about the same if not a touch lower (which is good). He's not dsating as much either which also leads me to think he's more comfortable. He can also handle brief periods without the CPAP and just oxygen supplement. I'm really proud of him but completely nervous. Originally he started at a pressure of 10, yesterday was brought down to 9, and today he's been brought down to 8. I really don't want him to have to go back on the respirator. He hated it so much and he was so uncomfortable.

Today he's working with his developmental specialist and his physical therapist to stretch out his muscles so they don't get tight and uncomfortable. So far they say he's doing really well with that.

Please, I'm asking now more than ever. Please pray and pray hard. Pray for Beau to keep doing well on the CPAP until he's ready for the nasal canula. Please pray to God to keep my little baby healthy, eating, strong, comfortable, and happy. Thank you.

2006-07-17T08:04:00.000-07:00

July 17th, 2006. Beau is doing well. He's had a quiet 48 hours with no bronchial spasms. I'm still scared over that. His very first one and they had to bag him. Really scares the hell out of me.

He's still doing great on his puffs and is sleeping a lot more now. He seems much more comfortable. Now he only gets angry when he has a wet diaper!

Last night Neill Kangaroo'd him. He did really well after they suctioned out his lungs. Neill fell sound a sleep with Beau. It was too cute.

Beau is now 3 pounds 2 ounces! Pretty good going, almost doubling his weight in almost 7 weeks. I can't believe he's almost 2 months old. It's actually insane how fast time seems to fly lately. I can't imagine how fast it's going to fly when he's home. Neill and I have begun planning his bedroom and picking out travel systems. I can't wait to finish it and put our little baby to sleep in his own crib in his own house. Maybe I shouldn't even think that far ahead, I might jinx it. Cautious optimism is so hard to remember!

Please keep praying for Beau and Aiden. I know I do!

2006-07-15T05:08:00.000-07:00

June 15th, 2006. Beau is doing good. They've started giving him "puffs" into his respirator. They are very similar to the meds in inhalators for people with asthma. They open up his lungs so he can absorb oxygen better when he breaths. He had them before, but was too young for them to really do anything for him. Now they're working beautifully and his nurses were able to suck out a bunch of the junk in his lungs. He seems much more comfortable now. He'll get those every 6 hours until they aren't beneficial to him any longer. I'm just happy he's more comfortable.

These pictures where taken by another parent in the NICU whom we've become friends with. I think she did a great job! He looks so cute in his little Roo outfit from his older sister. To me, he looks like a baby, just smaller.

Lets keep praying for Beau, Aiden, and all the NICU babies who could use all the support they can get. These poor babies shouldn't have to go through all of this but for some reason they are and they're overcoming obstacles everyday. I am amazed everyday. It sure makes you appreciate life.

2006-07-13T21:43:00.000-07:00

July 13th, 2006. Today Beau was good. I didn't get to see him until the evening, but I did go shopping for him with my mom. We got some really cute outfits for the little man.

He's been holding these last few days. Not a lot of new changes. Mainly adjusting his vent rate settings. These settings regulate how many breaths the machine gives him per minute. They were going to adjust them tonight and take a blood gas in the morning to see how he's responded to it. So far he's been doing ok. One day he's great and happy to be at a lower rate, then the next he's not good enough to make a change. That's how he was today. His gas wasn't great but wasn't bad- so he got a "growing day." These are days he can just chill out.

When I went to see him tonight he was pretty crabby. Lots of breath holding and easy aggitation. I've only seen him be like that with nurses, never with me. I think he was having a pretty rough day. I got to hold him regardless. He did well, not great, but well. He got upset twice where it was hard to bring him back up, but in between those two crabby times, he was really good. He really scared me when they put him back in his isolette. He didn't like it at all! He brady'd for quite a while, holding his breath and all. His heartrate dropped to 60 beats per minute and his blood oxygen level followed suit. I was scared watching the nurses try to bring him back up. When he finally brought himself back up, after a very scary 4 minutes, we all got to laugh about it. His nurse said how grumpy he was about being separated from me. Good moral boost for me, but not good for him. Little monster. If I knew he was going to react like that I never would have pulled him out in the first place. It's much better for him to sit quiet and sleep and grow. I know he has lots of benefits and growing while being held, but not when he's so easily aggitated.

I still hate leaving him at the NICU. I wake up every morning and I can't wait to go see him. I miss him so much. Leaving is a whole other story. I can be dead on my feet and ready to fall asleep, but I still don't want to leave his bedside. I can't wait to take him home. I miss him already and I just left the NICU.

2006-07-13T03:20:00.000-07:00

July 12th, 2006. Beau is doing well still. He's been put on an antibiotic to knock out his infection which is bright pink and he threw up all over his brand new clean clothes that I had just finished washing. I'm smiling about it. I love being a mom to him and if that means laundry, then I'm happy to do it. Anyways, back to the infection. The attending doctor feels that bacteria is there, but only hanging out on the tube and not really bothering Beau, but wants to be safe and treat him for 7 days. I am completely fine with treating before it becomes a problem.

After that, I asked the attending how he plans to proceed with Beau should he continue to do as well as he's doing on his vent settings. He doesn't want to switch Beau back to the other mode that was better for his lungs. Instead he wants to keep weening him off of the vent as they've been doing until Beau is at a place where he can be switched to CPAP. Beau's vent settings were further reduced last night to 30 breaths per minute that the machine gives him. He was at 40 last week. So far he's done well, not great, but good. Every day they take a blood gas on him and adjust him as he can handle. He's had a few days where he couldn't be adjusted, but seems to be doing better on the lower settings as a whole. He doesn't dsat as much, although when he does it's scarier than before. Yesterday he got to 39 percent before he picked himself back up.... not good. His pCO2 is much better than it had been on the lower settings. He's still bearing down and holding his breath, but also pulls himself out of that sooner too. I've also found that by lightly blowing on his face he forgets what made him angry and stops holding his breath.

Beau had his first eye exam yesterday. The results came back as immature. That is really good. They could have come back with ROP which is a condition that effects blood vessel growth in the eye and can have little to no problems or blindness with the most extreme situation.

Other than that Beau is still stable and doing well. He still likes to be wrapped up tight and loves to be held. He doesn't really like new people, which isn't good concidering the nursing staff alone contains around 200 people. He doesn't like to be stroked or messed with too much, but loves to cuddle up with your hand or his animals.

Please keep praying for him to continue to do well, stay healthy, and grow stronger. Thank you.

2006-07-11T07:50:00.000-07:00

July 11th, 2006. Yesterday we didn't go see Beau. I feel aweful, but he needed a quiet growing day. He had a lot going on and his oxygen requirements have been slightly high to prevent such low drops when he dsats. It scares me so much when he dsats that low and bradys with it. *Dsat refers to his blood oxygen level. A good range for Beau is 83-95. Anything lower is not good, higher is tolerable. Brady refers to a drop in heartrate. When he's really angry or irritated his heartbeat drops to less than 100 beats a minute and that really isn't good.* Lately he's been dsat-ing to 65 then slowly pulling himself back up. There seems to be too many things that set him off. He doesn't like when new people touch him. He doesn't like his breathing tube. He doesn't like the fluid in his lungs. All of those things and more set him off. Sometimes he does it simply by moving or stretching.

Today they are continuing with his iron, potassium, and sodium supplements along with his diaretic. They had stopped the diaretic because they were low. He also had a bit of the junk in his lungs sent to the lab and they've come up positive for the same bacteria he had before. They've decided to treat him for it before it has a chance to get worse and try to relieve some of the fluid in his lungs. I think he'll be on the same antibiotic again for 7 days. We'll see. One way or another they're keeping a close eye on him.

Other than that he's still being Beau. His nurses keep saying it's lucky he's as cute as he is to get away with all of his antics. His newest isn't pulling out his breathing tube, it's working the tape off of it first. Smart little monkey.

2006-07-09T11:37:00.000-07:00

July 9th, 2006. I spoke to Beau's nurse last night and this morning. He's come off the new mode of ventilation and back onto his original one. He was building up too much fluid in his lungs due to the CLD (chronic lung disease. She said it's not a step back or a step up or down, just a different way of keeping him breathing. Since going on the other mode he's been doing great. All of his blood gases so far have come back great and they were able to reduce the amounts of breaths the respirator gives him to allow and encourage him to take more breaths on his own. He's definitely happier about it. He fights the respirator much less and doesn't dsat as much as he did before. I say that now, but who knows what tomorrow will bring with that boy! All of his nurses say he's lucky he's so cute, it's his only saving grace.

They are bumping up the calories in my milk again. He's doing great with the extra protein and so far he's been tolerating being fed over one hour instead of one and a half hour feeds. I'd like to see him get back on drip/gravity feeds but I don't want to rush him either.

Also his night nurse, whom we adore and wish was a primary, calmed me a lot about visitors and such. The rules are: everyone needs to be in good health (no colds or flus or sniffles or anything like that), everyone needs to wash their hands before they touch him, don't touch his hands or his face as that's a very quick way to spread RSV, and to keep Purell in EVERY room of the house and make sure all visitors use it. PHEW! I feel better talking to her about such things. I'd hate to be isolated for the whole RSV season (autumn to spring). I'd get cabin fever, and then what kind of mom would I be!?

Please keep praying for Beau. It really means so much to us and I believe it helps him. Thank you!

2006-07-08T08:27:00.000-07:00

July 8th, 2006. I'm on my way to visit Beau now. Yesterday his nurse told me he'd been switched to a different mode on his ventilator. This new mode has less pressure on his lungs and basically helps him to take a breath. Now he initiates the breath and how much pressure he uses. Before the machine was breathing for him with loads of pressure. That really wasn't good for his Chronic Lung Disease, but this new setting is much better. Plus it'll help him get off the respirator and onto the CPAP sooner.

He's also been put on two diaretics that remove the extra fluid from his lungs caused by the Chronic Lung Disease. They don't act the same way the lasix did by flushing out all extra fluid. They are lung specific so we won't see a change in his appearance, only in total weight. This will also give us a better idea of his true weight and not fluid weight.

For the future, because is his lungs, we can't have unhealthy visitors. We have to be really careful who comes over and who doesn't. We can't bring him to the store with us during RSV and cold season. I hate this situation. I really do. Parents should be able to bring their babies home from the hospital and live a normal life. Not bring their babies home months after giving birth and keep them isolated all winter. It's just not fair!

2006-07-06T15:29:00.000-07:00

July 6th, 2006. Sorry for not writing lately. I had a bit of trouble adding photos to Beau's blog. This is the one I've been trying to put up since the 3rd. This was Neill's first time Kangarooing with Beau. I love this picture. He's patiently waited 5 weeks to hold him. I think they look adorable together!

Beau is doing well, still in his setting off all his alarms phase. Today was his first day of lots of new stuff! He had a blood gas this morning that came back awesome so they were able to come down on his vent pressure. He's done great with that all day today. They also went up on the calories they're adding to my milk and he hasn't spit up or vomited that all day!!! YAY! He also had his first day of physical therapy and at first he didn't like them messing with him, but then he settled down and stopped fighting them. I'm so happy for Beau. The sooner he gets off that ventilator the sooner his lungs can start healing from the Chronic Lung Disease. I'm really happy with him accepting the extra calories in my milk. He'll start packing on the weight now that he's decided he likes it and doesn't spit it all back up.

2006-07-03T22:13:00.000-07:00

July 3rd, 2006. Today was a funny day in the NICU. Beau is driving his nurses crazy with his I-feel-like-settling-off-every-alarm-I-have phase. He likes to drop his blood oxygen level then pick it back up as soon as someone comes over to check on him. It's kinda funny. You can tell the nurses who've had him before, they're pretty calm about letting him pick himself back up. Then there's the nurses who really don't know him and run over to adjust his settings just to "chase" his blood oxygen levels all night. For lack of better words, they learn all his tricks very quickly.

He's also fighting with his breathing tube. He wants it out so bad. He's constantly grabbing it and pulling it away from him while pulling his head back. He's notorious for working off his tape. He's also really good at using his tongue to push out the tube. (I have no idea how he does that one!) I think he'll be a lot happier with the CPAP until he learns how to pull that one off too. Let's hope he's happy enough with it to leave it alone. I know I'm sick of watching him gag himself fighting with the breathing tube, he's got to be sick of it too. On top of that, he's not only gagging on the breathing tube, but vomiting up milk. They thought his lung infection might be back when they suctioned out yellow stuff, but now they think it was milk that he'd choked on and got caught in his lungs. I can only imagine how uncomfortable that must have been for him. Now they watch him and suction him everytime he vomits or spits up.

Another thing about spit up, since I know we're all fascinated by it, is Beau doesn't seem to like the extra calories the nutritionist has been adding to my milk. He spits up after every feeding, but he keeps down my plain milk. His nurse assured me that it's nothing new and very common. Instead I've started separating my fore and hind milk to make sure he gets a few extra calories. For those that don't know, foremilk is the first milk to be expressed. It's thinner and doesn't have as much "good things." Hindmilk is expressed a few minutes after the foremilk and contains more calories and antibodies and proteins and stuff. It's the best thing I can give him until they can get him to keep down the calorie fortified milk. I think it's kinda cute that he only likes my milk plain. ANYWAYS!!!

Back to the funny parts of the NICU tonight. Neill finally got to hold Beau, and of course, he acted up. He was trying to squirm away from his breathing tube while on his daddy. I'm sure he's figured out that Daddy doesn't know all his tricks to extibate himself. So of course, Beau had started feeding while on Neill and he can't be disturbed until he's done or he'll puke. So here's poor Neill trying to keep Beau still and comfortable while he's setting off all his alarms AND trying to extibate himself for an hour and a half. I thought it was funny, I think Neill was a little freaked with it being his first time holding Beau and all.

The next funny thing happened with the machines. At first the remote to his machines stopped working and Neill had to replace it for Beau's nurse since he's the tallest. Then after Beau goes back into his isolette, the monitor stops working and we had to judge Beau on his color alone. His heart rate, breathing rate, and blood oxygen level kept blinking in and out so we'd get a few seconds to see how we was handling it all. Thank God he handled it really well. His nurse rushes out to get a portable monitor while another nurse goes on a hunt for another monitor (which are huge and heavy!) Then as all of this is being set up, Neill has the bright idea to totally reset the monitor. You're not going to believe it, but it worked! After all that. And of course I'm giggling because its the most rediculous situation and I think I really needed the release from all the stress lately. Then Neill's giggling and his nurses all join in too. Poor Beau. He must think we're all insane. So, thus ends our night at the NICU.

I know I say this all the time, but I want to thank everyone out there who's praying for him and put him on prayer lists. Please keep it up! Everyone have a great 4th of July!

2006-07-02T10:04:00.000-07:00

July 2nd, 2006. Beau is doing well lately. He's in a phase where he likes to set of every alarm he has. His nurses say this is perfectly normal and will probably last for a few weeks. He's also began fighting harder with his breathing tube. He's breathing over the machine and constantly trying to pull the tube out. Self extibation is not fun! He's so funny. His primary nurses constanly watch his right hand. He sneeks it up real slow before finally grabbing ahold of the tube and pulling on it while pulling his head back. He's also got a new trick where he grabs the tube and turns his head away from it. Two self extibations later and we've all caught on to what he's up to. The respitory therapists would like to try him on a CPAP next time he pulls out his tube. We'll see how he does with it. He could do great and never see an intibation tube again or he could fail and stay intibated. Course he could flip flop between the two of them too. We'll see what happens.

So we went out and bought him all these nice new blankets, washed and dried them all nice and go our smell on them... and the next day he's pooped all over them! Yes, my son, mister I had to be moved up to the next size diaper cause the ones that fit me don't hold it all. Mister droopy drawers himself has made a mess of not one, but three blankets! Ohhhh the joys of a boy with a healthy digestive tract. Hehehehe. I'm still so in love.

Keep up the good thoughts and prayers, I know I am! Thank you.

2006-06-30T05:48:00.000-07:00

June 30th, 2006. Beau's doing well for being ONE MONTH OLD!!! He's peeing lots again and returned his "more stable" status and blood gases. That's not to say he hasn't been stable- just now he's more so.... Anyways! He's developed a hernia which is also not uncommon in preemie boys. He's not on any pain with it. They're going to continue monitoring it and if it gets worse, maybe close it up. That will be way further down the line.

Yesterday I was able to hold him, not Kangaroo, but really hold him. It was great looking at his face and giggling with Neill about his little expressions and smiles and reactions. It felt like a normal family. Since it was his first time being held like a full term baby, the nurse said we'll try it for 20-30 minutes and then put him back. Two hours later he got too fussy and we put him to bed. I'm still smiling today.

We also got good news yesterday. One of his nurses suggested putting clothes on him and bringing in his baby blankets to keep him warm and comfy. She said him smelling us will be a great comfort to him and help him calm himself down. It might help to keep him more stable longer since he really seems to like it when we're there with him. It's so funny how a baby so small and not ready to be in the world is here and not only that- but is responding to the world around him. He looks in our direction when we talk to him. He instantly calms when we put our hands on him and comfort him. It's odd, but really great to see him respond better to us than anyone else. It blows my mind- in a really good way!

Please continue to pray for him. I'm convinced it's all the thoughts and prayers that have helped him along so far. Thank you thank you thank you!

2006-06-28T08:37:00.000-07:00

June 28th, 2006 and not much pee yet! His nurse says it's very common in babies like Beau. Their bodies can only focus on one thing at a time and right now it's focusing on the infection. They'll probably give him a diaretic and she says premies like often need them when they're in the hospital. I'm going to go see him this afternoon and I'll post the newest update afterwards.

Please pray for him. Good thoughts!!

I just got back from the NICU. 5 good hours with Beau too! I got to Kangaroo him again today for 2 hours. He does so well when he's being held skin to skin. I also had a "family meeting" with one of his doctors today. She said his latest ultrasound shows old blood in the space at the base of his brain. She thinks his second head ultrasound was a day shy of catching it. It's been about a week and a half since that second ultrasound and it doesn't look too bad. He hasn't shown any problems because of it and it's not putting any pressure on his brain or disrupting the flow of fluid around his brain. They gave it a 2 on a scale of 1-4, average she says. She also told me it's expected in a baby his GA and they were pleasantly surprised when it didn't show up on the second scan. They're going to do a follow up on Monday and plan a course of action depending on that scan.

She also went further into detail about his lung infection and false blood infection. Everyone at the NICU has brought up the "how he got this infection in the first place" talk. It didn't even occur to me to ask that. I know hospitals have bacteria and it could have come from anywhere. I could have breathed it on him for all we know. My word of advice to all you NICU parents out there, family, and friends of Beau- don't do that to yourself. Don't keep racking your brains about where an infection could have come from. It will drive you insane and no one in this situation needs to lose more sanity. Instead- be calm, understand the risks, but focus on what they plan to do about it. Anyways, I'm done with that rant. Beau will be on a 7 day course with those two antibiotics to really kick this bacteria's butt! She also said they can't get rid of it completely because of his breathing tube, and bacteria love breathing tubes! The goal is to knock it out enough to keep it dormant and keep Beau healthy and growing so it doesn't bother him again. Chances are it will come back but for now, we focus on getting rid of it.

He's peeing more than he was yesterday, and he's not so swollen. Thank God for diarectics when you have a sick kid that wants to hold on to fluid. His CO2 levels are up and the respitory therapists aren't happy about that. The doctor seems to think it's related to where they take his blood gases. Originally they were taking them from his arterial line to get a baseline, now they're taking it from his heel. This would make sence since capillaries aren't as O2 saturated as arteries. The plan of action for this little turn of events is to keep going as they have been and keep checking his blood gases to see if it works itself out or if the original baselines were flawed due to where they were taking his blood gases from. So now another wait and see.

And as always, I like to leave these blogs on a positive note. Tonight Beau's doctor said he's a tough little boy and his progress so far has been very good. When he had his PDA surgery and now this infection, all they wanted was for him to stay the same and not get worse, and he has so far. I guess that's all we can do, pray he stays the same or gets better. Personally I'm praying he gets better.

2006-06-28T08:28:00.000-07:00

June 27th, 2006. Beau's blood culture hasn't grown anything in a 48 hour period so he's been taken off of that antibiotic. They think the sample was contaminated. He's also been given a "backup" antibiotic for his lung infection. The good thing is they're still able to easily suction the gunk out of his lungs and it's not yellow anymore, it's white. White is definitely better than yellow.

On a more positive note, I got to Kangaroo him for two hours. He did really well coming out and going back into his isolette. He was in such a deep sleep at the end, he didn't even notice being put back.

His newest trick is retaining fluid and not peeing it out. They're going to do more tests tomorrow to make sure it's related to his infection and not his kidneys.

2006-06-26T11:19:00.000-07:00

June 26th, 2006. Beau tested positive for blood in his meconium yesterday and today. They stopped feedings yesterday because of it, but are resuming at a reduced amount today. Poor baby, that's all he needed on top of this infection.

Today they're going to test his blood to see how effective the antibiotic has been. They're still suctioning out his lungs every few hours. He's on less oxygen than he has been lately. I'm taking that as a good thing- his lungs are getting rid of the secretions and allowing oxygen to be absorbed. (?) He also has a follow-up ultrasound scheduled this week on his head.

2006-06-25T08:09:00.000-07:00

June 25th, 2006. Yesterday I spent 4 hours at the hospital with Beau. His infection was also found in his blood, not localized to his lungs. The lab was still running tests to identify the bacteria. He's responding will to the first dose of antibiotics. His oxygen is way up. He was at 80% when I got there, but down to 70% by the time I left. His night nurse said he was resting comfortably and his oxygen was more around 30%. That makes me feel so much better.

When I called this morning, his day nurse said his oxygen requirement is higher than last night, since he's more active during the day, but lower than yesterday's. He's still responding very well to the antibiotics. He's begun to spit up some of his milk though. She thinks he's just getting too much at once time since he's still making belly sounds. They're thinking of giving him less, but more often so he'll still have the same amount of milk in a 24 hour period. I'm hoping that works and he'll stop spitting up. If he doesn't stop spitting up they'll take him off feedings again then restart him slowly with the trophic feeds.

Please keep praying for him. A huge thank you to everyone out there who's prayed for him in the past and continue to pray for him now. Take care.

2006-06-24T09:04:00.000-07:00

June 24th, 2006. I've just gotten off the phone with Beau's day nurse. She said he had an ok night and today isn't any better. They suctioned out his lungs and found yellow secretions. They had it tested and it came back as a bacteria with gram positive and gram negative stains. They're going to give him a semi-broad spectrum antibiotic to take care of both bacterial types.

He's still taking my milk like a champ and all of his other vitals are spot on. He'll have another blood gas at noon. I'll update again when I get back from the hospital.

On a personal note, I'm troubled by this and I need to ask a favor of anyone who sees this post. Please pray for Beau. Even if you're not religious or you don't do that sort of thing... please pray for him. I pray everyday. Today I pray the antibiotics will clear his lungs. I pray they are what's causing the junk in his lungs and not some underlying "thing". I pray he'll have the strength to get through this. Thank you.

2006-06-23T20:41:00.000-07:00

June 23, 2006. Yesterday was our 4th wedding anniversary and after dinner and a movie we spent it with Beau. He was okay. He seems to be building up fluid in his lungs and of course he can't take in as much oxygen when he's feeling so yucky. They started him on laesix to try and flush the fluid out of his lungs. His nurse said it was taking a lot to calm him down, including extra bolisses of fentinol, especially after being changed. (Please excuse the spelling.) His blood gases aren't looking so good either. On the plus side, he's taking my milk like a champ with no issues. They're still increasing his feeding amounts every 4 hours. His heart is doing great as is his blood pressure.

Today, when we saw him, his oxygen was up to 70%; where as he usually hovers between 30-50%. Kind of freaked me out. I really don't want him back on the oscillator. Today's xray looked better than yesterday's in terms of fluid. So, I guess the laesix is doing its job. His day nurse said he's still doing impressively well for a baby of his gestational age. He's gaining weight, but how much of that is fluid isn't known.

Tonight when I called the NICU, his nurse said he's back down to 40% oxygen and seems very comfortable. She said he's not fidgety at all. He did very well getting his diaper changed and all set up for the next 4 hours. I'm happily surprised. She also hasn't had to give him extra fentinol which really makes me happy. I'd like him off of that as soon as he is okay with it. So in a nutshell, today was better than yesterday, but tonight is better than today... I'll take it!

2006-06-21T07:20:00.000-07:00

June 21st, 2006. Last night I got to Kangaroo Beau again. He slept while I relaxed for two and a half hours! It was absolutely amazing. He's so calm when he's with me. Neill sat in the rocking chair next to us. It was nice to take a little family nap here and there. It was even better to sit and talk to Neill with Beau laying on me. I felt like a real, cookie-cutter family you see on TV and in books. It's really so hard to look at your baby laying in his isolette and know that there's not much you can do. All I can do is keep supplying the breast milk and be there when he can be Kangaroo-ed.

Okay anyways, he's up to 990 grams! That's 2 pounds, 2 ounces, or just under one kilo. They're working up his feedings to 80-100 mL while backing off on his IV's. When he's completely off of IV's, he should be up to 150 mL for his weight class. Now that they've put in a bigger breathing tube, he's much more comfortable and his oxygen and pressure settings are pretty stable. His blood pressure is spot on and he's growing like a weed!

Lets keep our fingers crossed and keep praying to God that he keeps doing so well.

2006-06-20T09:32:00.000-07:00

June 20th, 2006. HAPPY THREE WEEKS BEAU!!! Here he is smiling for the camera!

He is doing GREAT since his surgery! He took a few days to calm down, but now... wow is all I can say. He's now 960 grams and taking trophic feeds. They are going to up his feeds to double today. It's the first time he's been able to do that. I'm so proud of him.

He's also had to go up a size on his breathing tube since he's growing so big. I'm really happy about. He kept pulling out his tube and making noise around it. Not fun.

I should be able to resume Kangarooing him sometime this week or next. I can't wait, he responds so well to it. I love seeing him so calm and in such a deep sleep.

I pray to God he'll keep doing so well.

2006-06-18T17:03:00.000-07:00

June 18th, 2006. Beau's come out of his surgery "beautifully," so say his doctors and nurses. I'm pretty happy about that. His chest tube has come out today. He had a bit of a peeing problem last night but finally went three big pees in 4 hours. It's so funny to be really proud of your son and breathing a little easier when he pees.

He had a small issue with his breathing tube. Somehow there was a leak? As his nurse says, one possibility is that his trachea has grown with him and the tube they originally put in is now too small to form a seal. This means his lungs weren't being inflated as much as they should have been.

Today is the first full day after his PDA surgery and he's still looking really good. He's growing rather big and kicking those feet out then pulling them back in. His nurse says that retraction of his limbs is really advanced for his age. Lets hope and pray he continues to do so well.

2006-06-17T04:21:00.000-07:00

June 17th, 2006. Today Beau is getting another ultrasound to make sure his PDA is still open, if it is he'll go straight into surgery to close it. At first I was slightly happy he was going to have it- an end to 2 1/2 weeks of it opening and closing. I thought, "Okay, well now we can have a permanent end to this and he can finally move on." Yesterday I spoke to the various doctors who will be involved with the surgery and now it's become VERY real. I'm freaked, I'm worried, and I'm praying to God that my little boy will be okay. I know that to all the doctors and nurses this is completely routine and they've done it a hundred times with no issues, but I haven't gone through it a hundred times with no issues and I'm not the mom to all the babies who've already had it. I'm Beau's mom, and I think I'd be scared for myself if I wasn't worried about him.

I'd like to give everyone who's read this blog and had us in their thoughts and prayers, whether you've left a comment or not, a huge Thank You. Telling us you've been through it, calling and asking how he's doing, or letting us know you're there if we need someone means the world to us. Thank You again from our family to yours.

2006-06-15T19:43:00.000-07:00

June 15th, 2006 and I think I spoke too soon about that damn PDA!! Tonight his nurse heard a murmur. They're not sure if it's from his low blood or the PDA. Tomorrow he's getting a blood transfusion and an ultrasound to see which it is. If the PDA is open he'll go to surgery immediately. One way or another, it looks like we'll find out tomorrow. I'm not scared or too worried about him having the surgery. I just want it closed so his body can do what it needs to do. He goes downhill so fast when it's open. I want it over with and sealed permanently for his health- not so I can sleep better.

On a happier note... Mr. Beau Jacob has decided to open his eyes!!! He's so cute!!! He's so responsive and already trying to use them to see who's talking. ANNNND... he blinked when Neill took a picture of him, so we know they're developing just fine so far.

It's amazing the things you take for granted when you've had limited exposure to premature babies. You just assume things are fine. I know I'd have taken him for granted would he have been full term. I wouldn't be so excited about him blinking or responding to my voice or even living day to day. I wouldn't look forward to changing his diaper or cleaning his mouth. Although it's not the most ideal situation, I've learned the value of my son and just how precious life is. How strong his little spirit is, how much I love him. I don't think I'll ever take him for granted.

2006-06-14T17:10:00.000-07:00

June 14th, 2006 and it's the first time I've been able to hold my son since he's been born. I think he's absolutely perfect. He cuddled up on me and fell fast asleep. I can't believe how much I love him, how much he amazes me. This tiny little person who I barely even know has got me wrapped around his little finger. I'm still on cloud nine. His nurses want me to Kangaroo him once everyday as long as he's as stable as he was today. I have no problems with that at all! I'm more than happy to hold him for as long as he wants. At first the nurses want us to start with one hour, then gradually increase the time. I love the sound of that. It'll be hard, but happy, for me to watch him sit on his dad instead of me. I am so in love with my family. It was a really amazing day.

2006-06-13T07:26:00.000-07:00

June 13th, 2006 and Beau TWO WEEKS OLD!!! He's doing well. I just spoke to his nurse. They turned on his Jaundice lights again, but are shutting them off today. His oxygen has been between 30 and 50% with the conventional respirator. He hasn't had a poop in a while so they're giving him a suppository and they slightly increased his pain meds to keep him a little stiller. He's been wriggling all over the place and pushing away the cloth boundaries. His nurses think he's funny with lots of personality. That left leg just loves to be out straight- he is his father's son!

They're talking about giving him my milk again as soon as he poops. Hopefully the arterial line can come out too so I can begin Kangarooing him. I can't wait to go see him this afternoon. He's reached 2 pounds! Keep up the good work baby, keep up the good work.

2006-06-12T16:15:00.000-07:00

I just heard from Beau's nurse... the PDA is CLOSED!!!! YES! He won't need surgery! Of course there's a chance it can open again and at that time he will need the surgery, but his nurse says it's a small possibility. I'm so happy to finally be done with that damn PDA opening and closing. Lets all hope and pray it stays closed!

2006-06-12T08:56:00.000-07:00

June 12th, 2006 and Beau is having quite the busy day. His nurse says he's doing ok. I hate when he puts it like that. Okay never sounds as reassuring as it should. It's still better than the hearing he's not having a good day!

Today Beau is getting an eco on his heart to see if the PDA is open. If it is they want to give him a small dose of endocin to try and close it. Should that not work he'll have to have the surgery right away while he's still stable. It doesn't seem real enough to be scared. His nurse warned me that I could be hearing from all the doctors involved, so not to panic if the hospital calls. I guess all of them have to call and tell me what'll happen and what to expect and answe any questions I have. The only one I can think of is if he'll have a scar his whole life. I'm VERY unnerved thinking about my little baby having to have surgery! I can't get the image out of my head. Not good.

He's also getting another blood transfusion and an x ray to make sure the breathing tube is still where it should be. I should be able to find out the results tonight. I'll post them as soon as know.

2006-06-11T20:36:00.000-07:00

June 11th, 2006 and I have had an amazing day with my son! My mom and I went to the hospital in the early afternoon to find him still on the good respirator. (I say the good one because I HATE the vibrating one!) He looks so good, color, movement, stats.

He's finished his second round of endocin, though they want to give him a "tail end" dose just to make sure it's closed. Should the PDA reopen again, they'll have to wait till he's VERY stable and give him the surgery. That slightly scares me. He tends to go "unstable" when the PDA is open. What if he doesn't stablize if it reopens? Thinking of all these things and worrying this much is bound to drive people insane.

Just to keep my sanity... the nurse on today tells me to change his diaper and take his temperature. I slightly panic. Although I've helped change a diaper, I've never done it myself. He's so small and squirmy. How the hell am I gonna do this. Taking his temperature is a walk in the park- lift arm, place thermometer in armpit, close arm... hold. The diaper was something else. I unfasten the dirty diaper but leave it on just incase he feels like peeing again. (He has a habit of that!) I unfold the clean diaper and put it close by. Now Beau feels like stretching. Now contracting. You've got to be kidding me. Finally I figure it out, wipe him clean, then replace the diaper. I'm so proud of myself! Quite the milestone for both of us.

2006-06-11T20:25:00.000-07:00

June 10th, 2006 and I have NEVER known fear like I have just experienced. I called the NICU early and then right before we left the house to visit him and was told the same thing each time- he's doing really well, nothing eventful.

As soon as we got to the NICU we check in. He calls inside and hangs up the phone with a very straight face and tells us a nurse will be right out to speak with us. I can't feel my legs. I'm cold all over and I feel the blood drain from my head. I might throw up right here and now. I'm imagining the absolute WORST and I can't bear it. Neill hugs me and calms me down. He reassures me that everything will be alright. We sit together in the waiting room for what feels like forever. My heart is pounding out of my chest when a nurse comes to us.

She doesn't smile at first. She says she's not the nurse in charge of our son, but she wanted to let us know that he's pulled out his breathing tube and they're replacing it now. I feel like my legs are going to give out. Why couldn't they just say that at the beginning!!!! I can't help but smile and laugh. The nurse is startled till I explain and she smiles back. I feel so much better now.

When we're finally allowed back in we're caught up to speed. He pulled out his tube a little and they had to replace it. They had to bag him while they changed the tubes, but he did so well breathing on his own, they decided to return him to the other respirator. I'm SOOO happy about that. No more vibrating him out of his bed, no more narcotics. My little boy is stronger than I give him credit for.

The nurses and respitory therapist rave about how tough he is, what a fighter he is, how well he's doing so far. I pray he will continue to do well. They think the PDA has closed but plan on doing an ecocardiogram soon to double check since one doctor thought she heard a little murmur.

He's looking so much better these days. He's now 900 grams, 80 grams more than his birth weight! He looks down right chubby and I'm dying to cuddle him. He is the most beautiful thing I have every seen.

2006-06-11T20:18:00.000-07:00

June 9th, 2006 and I was shocked when I came into the NICU. Beau was switched to the other respirator and it vibrates him. I'm so scared I can't not cry. I'm trying so hard to hold it together, but that's my little boy in that isolette all doped up to keep him "comfortable."

They've given him the first dose of the second round of endocin. They think closing the PDA will help his lung and blood gas levels stabilize. If it doesn't close and stay closed he'll have to have the surgery. One of Beau's nurses says 99% of preemies end up getting the surgery. I don't want to think of them cutting my little boy. He's already got three IV's with too many tubes leading into them. I shudder thinking of the IV tubes running into his little body. This shouldn't be happening. I'm losing it and I know it.

I don't want to leave him but looking at him is so painful. God why can't I switch places with him? Why can't I take away all of this and surround him with love and calm and peace and comfort like non preemies get?! Why Why Why!!! I'm so scared. I'm so helpless. I only want to be by his side, I'm too far from him.

2006-06-11T20:14:00.000-07:00

June 8th, 2006 and I'm getting scared for Beau. They won't let me hold him. His PDA has opened again and they have to keep increasing his oxygen to compensate. They talk about switching respirators to one that delivers 900 breaths a minute to increase the oxygen in his blood. They want to give him a second round of endocin to close the duct. They've stopped giving him my milk until he can stabilize again. They've got a plan of action for seemingly every possibility. I'm bummed driving home, but still okay. I feel like he's in good hands and they'll take care of him.

2006-06-11T20:09:00.000-07:00

June 7th, 2006. Beau is stable enough to Kangaroo him. I'm so excited all the way to the hospital. I can't wait to hold him again. Mothers should be able to hold their babies.

We arrive in early evening and I'm bouncing with excitement to hold him. I'm all set with my button up shirt and front snap bra. When we walk into the NICU there's two new babies, a mom on a stretcher, and a dad. The mom is beaming at one of the babies, the one not getting all the attention from the doctors. He's small and pink, but doesn't move much. The father looks serious and worried. The doctors cluster around the other baby. He doesn't look good. He's very dark red, almost purple and he's limp. I have a sinking feeling when I see him.

The nurse won't let me hold Beau with all the commotion. I'm angry. I feel robbed. It wasn't bad enough to go through all of this, now they're going back on their word to let me hold him!? There's nothing I can do but sit with him and touch him through the isolette and read him a story. I cry the whole way home.

2006-06-10T22:23:00.000-07:00

June 6th, 2006. HAPPY ONE WEEK OLD BEAU!!! I'm so proud of him and how well he's done so far. He's absolutely amazing. He's gaining weight- up to 720 grams. The nurses and doctors want to start kangaroo care with him soon. I'm so excited I can hardly wait! It's been 7 whole days since I've been able to hold my son.

2006-06-10T22:21:00.000-07:00

June 5th, 2006. Today is the second day I haven't seen Beau. I can't not call the NICU for an update.

He's doing well, stable. They've started giving him my milk. I'm delighted but I still feel on edge. I can't relax when I don't know if my baby will see the next day.

2006-06-10T22:15:00.000-07:00

June 4th, 2006 and Beau's had his first step backward. I'm scared but trying to remain calm and rational. I don't know if my son will live or die. His PDA has opened again and he's developing chronic lung problems. I feel like the world has gone silent as I try to hear the doctor tell us about his status. I look from Beau to Neill to the doctor and I still can't hear what's going on. I feel like I'm in shock.

Thank God Neill listened. He tells me it's not as bad as I think it is. He'll be okay. This is expected- par for the course- it's not for me. That's my little boy. I'm his mother. I should be able to hold him and calm him and feed him. This isn't fair. He shouldn't have to go through this. He should be safe and sound in a warm pool of amniotic fluid attached to me by the ambilical cord inside of me. I feel like I might go insane.

2006-06-10T22:12:00.000-07:00

June 3rd, 2006. The show must go on! We're having my grandparent's 50th at our house. I'm not ready to answer all the questions. Thank God Mom's taking care of it as best she can. She's attracting a crowd around Beau's photo album. I call the hospital. He's had his first poop!! A milestone I wasn't there to see. Today will be the first day I haven't seen him since he's been born. I feel like a horrible mother.

2006-06-10T11:44:00.000-07:00

June 2nd, 2006 and I wake up without my son. He's not inside me, he's not in the house. I feel hallow, going through the motions without feeling. Thinking of Beau brings me to tears. I can't wait to get to the hospital to see him. He's 3 days old and passed a huge hurdle.

Neill's flying in this afternoon. I'm so nervous. He's missed the whole pregnancy and the delivery. I don't know what his reaction will be when he sees his son covered in tubing with a ventilator tube in his little mouth. If it wasn't my son, I'd be horrified and pity him.

At the hospital and Neill will arrive in an hour or so. I sit by Beau's side and read him a story. My guts are in knots.

Beau's PDA has closed but has the chance of reopening. He's only on 21% oxygen. I feel hopeful for Beau's future.

Neill met me outside the NICU and I cried when I finally got to hold him and kiss him. We go in and see our son together for the first time. He looks so tiny and thin I can't help but get emotional. He wasn't so thin when he was born, he's lost a lot.

I feel like I can't breath leaving the hospital with my husband but not my child.

2006-06-09T19:34:00.000-07:00

June 1st, 2006 and I have to leave the hospital without my son. I'm all too aware that I'm leaving him behind. I tell myself that he's in the best place possible for him. There isn't better care anywhere in the country for preemies.

I visit Beau in the NICU before I go. I comfort myself with the thought of going back tomorrow. It's already 5 pm and to tell the truth, I am ready to leave the hospital. I need to touch base with something concrete, something I know. My whole world is turned upside down, inside out, then shaken really hard. I never envisioned it this way. Mothers are supposed to leave the hospital with their babies.

Thank God Neill will be here soon, thanks to my amazing father!

2006-06-09T19:27:00.000-07:00

May 31st, 2006. I'm still in the hospital. I'm glad mom slept at home. I've already gotten into the swing of pumping and I've been on my feet by myself with no pain since I'd woken up.

The phone won't stop ringing!!! I'm so happy to talk to Neill. He's the only one I really want there. I tell him about our son, how I'm doing, what the doctors and nurses say.

Mom and Dad stop by with Holly and Casey. Auntie Bella and Celeste also stop by. They are so amazing! I'm lucky to have such a supportive family. They offer Neill and I their spare bedroom and a place to park the car when we visit the baby. I'm overwhelmed.

We visit Beau in the NICU. He's so beautiful still. I love him so much and I hardly know him. He's lost weight, but everything else looks good. I feel like I'm holding my breath waiting for him to overcome the many obstacles he's encounter. I'm not very religious, but I find myself praying for my son. Please God take care of him. Please God let me see him grow up strong and healthy.

2006-06-09T19:19:00.000-07:00

2006-06-09T18:40:00.000-07:00

May 30th, 2006 and I'm in the hospital. I wake up still numb from the epidural. I'm pretty happy about it. At 10 they take me off the epidural to get contractions starting again. It's instant. The hot, searing, cramping pain takes over and I'm almost in tears trying to breath through it. They induce me. I've been at 4 cm since last night.

Mom spent the night and she looks so tired. I wish I could make it all better for her, for the baby, for everyone. Neill's called and I tell him what's going on. He calls every hour. I wish he could be here. I'm trying to hold on until he gets here. Just a few more days and the baby will have an 80% chance, not a 50% chance.

At noon a doctor checks to see how dialated I am, she steps back in surprise and calls in everyone. She's suiting up. Mom has gone downstairs. I ask the nurse to call her. Mom is running through the door and people are running into my room. My nurse, Christine, grabs one leg and mom grabs the other. I'm sobbing. I can't believe this is happening. A calming voice tells me to push when I'm ready. I push long and hard. I feel his head lodged in the birth canal. I stop and take a breath, then push again. I feel his head push through and out, his shoulders, his body, followed by his long legs. I feel every bit of it, even the cord pulling behind him. I hear his small cry and I cry too. I won't take my eyes off of him. They take him to a table while the doctor pushes on my belly to loosen the placenta. She needs me to push one more time. I do and the placenta comes out cleanly. The baby is placed on my chest for not long enough. He's got a breathing tube. He's small and pink and plump and I'm already in love. They give him 7s and 8s for the APGAR tests. I kiss his head, mom kisses his head and he's taken away. They ask if I have a name for him. I don't just yet. I'm still shocked. As they're wheeling him out of the room I say, Beau Jacob. They all smile and repeat it. They take him away. They call the birth at 12:08 pm. Neill calls at 12:30. I'm crying and I'm scared and although mom is there, I feel completely alone.

Four hours later I'm taken up to see him. He's so beautiful. I just sit and stare at him. The nurses tell me he's beautiful and big for his age. 1 lb 13 ounces, 13 3/4" long. So far so good, but it's too soon to tell. I'm worried and scared. What a way to come into the world. I feel bad for him. He shouldn't have to go through this.

He gets his first pictures taken by Caryn, his night nurse, at 10 pm. I hold them and look at them when I'm not in the NICU.

2006-06-09T18:23:00.000-07:00

May 29th, 8 am and I think my water just broke. I panic. It's too soon. I can't think straight. This can't be happening. Please God don't let this be happening. I call the doctor then yell for my mom. She helps me to the bed and puts my feet up. The doctor calls back, "Come see me at Parkland. Second floor." I stop panicing, mom is terrified. I'm telling myself that they can stop it. They can give me a drug or stitch shut my cervix. They have to be able to stop this.

At Parkland I'm told to put on a gurney, take off everything. The doctor needs to examine me. The nurse takes a sample from my pad to make sure it's really amniotic fluid. Doctor tries to comfort me, maybe it's urine. I hear the nurse tell the doctor it tests positive for amniotic fluid. He's still trying to comfort me. He examines me, takes a sample, tests it, comes back negative for amniotic fluid. I know he's wrong. He wants to test it again just to be sure. Tells me to cough, collects from the speculum. It comes back positive. I get a shot of steriods for the baby's lungs.

He sits next to my bed and tells me if the baby's born now there's nothing they can do and will term it a miscarriage. I'm shocked and terrified. This can't be. He's alive! He's been kicking inside of me for weeks now. He's got a good strong heart beat! I saw it on the ultrasound. You can't kill my baby! He's still calm, tells me he is going to call around to other hospitals and try to get me transfered to a place where they can save him. I beg him to save my baby. He warns me that women who've been later that me have been turned away. I'm histerical and mom is powerless. She's crying. This has got to be a dream. He comes back shortly with good news. Brigham and Women's will take us. The ambulance is on its way. I'm calming, there's a chance.

The ambulance takes forever. I hate the sad looks I get from all around. I'm cramping lightly. I'm scared and trying to stay calm for the baby. The ride takes forever. I'm alone with a girl who keeps yawning and a guy head down into his laptop. I'd never been so happy to see a hospital in my life.

Inside I'm taken to my room. Doctor's and nurses come in and out. They tell me what's going on, they're kind and patient. They explain everything, good and bad. They tell me what to expect. I'm comforted and calm. Mom and Dad arrive. They are a complete mess. Somehow we get ahold of Neill and I try to explain what's happening. He's scared. He can't get to me. He's so helpless, we all are. He calls through the day and I look forward to each and every one.

I have to be checked regularly for an infection. I'm given magnesium to stop the cramping/contractions. My white blood cell counts jump and I'm taken off the magnesium. At midnight I'm given an epidural and I can finally sleep.