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.

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.

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.

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.

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.

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.

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.

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.