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.

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.

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.

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.

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.

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.

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!

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.

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.

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.

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.

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!

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!

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.

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!

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.