May 7

The news for Will is not great. It's not horrible, but it's a long ways from good. we were hoping he'd be ready to come home in 3-4 weeks, but the doctors told us today it will be at least a month or two, and likely longer than that. He had some really bad breathing spells yesterday, and his airway is just not stable enough to send him home. The only way for his airway to become more stable is for him to get bigger. As he grows older, the cartilidge will strengthen and his airway will widen so it will be a lot less likely to flop closed. But he'll probably need to stay in the hospital until it does, and that will likely be a matter of months. It's so hard for us because we're so far away from him. It takes us three hours to get to the hospital in back, so by the time we go, spend an hour or two and come back, it's taken up the whole day. Now that Hays is home I just can't go as often as I could. I'm not sure how we'll get through several more months of this. I asked about the possibility of him going back to st. Mary's to grow, but they said we'll have to wait and see how he does over the next few weeks. We want him to come home, but not in his current state. If he stopped breathing at home like he did yesterday, we might not be able to resuscitate him, and we could never take a chance like that. We'll just have to suck it up and do what we have to do.
Hays is fine, but we're in the midst of another colic night. I had him settled after an hour of rocking, bouncing, etc, but then I tried to put him down, and now he's at it again. Lord help us, I am tired!!!!!!

May 6

Will didn't have a great day today. It was terrible, but he was having some breathing episodes. They called in the ENTs because they initially thought that the trach tube might be too shoet. They determined that the tube size was fine, but that he needed more pressure to keep the airway open. They went up on his ventilator pressure and that seems to be working. Hopefully he won't need the extra pressure for long. we really don't want him to have to come home on a ventilator or CPAP. If he does, that means he's hooked up to equipment all the time and he can't just be a regular baby. It will be really hard to take him anywhere because of all the equipment, so that means he'll be stuck in the house most of the time. It's not fair to Will. It's not fair to the other kids. I can't make them stay home all the time, but I'll feel horrible if I have to leave Will home with the nurse so I can do things with the other boys. I desperately want Will to have a normal, happy life and I can't imagine how he'll do that constantly hooked up to some kind of respiratory equipment. Matt and I were taking a walk with the boys tonight and all I could think was that we wouldn't even be able to walk aroung the neighborhood with Will without it being a major ordeal that pratically requires a hospital on wheels. Hopefully I'm worrying for no reason. He may just need the exta pressure for a few days. And I have to keep in mind that all of this is temporary. He's going to outgrow it all within a couple of years. But I still worry about the problems this could create for him later in life with learning to crawl, walk, talk, etc. Please pray that Will overcomes this quickly. I just have to keep the faith that God is looking out for him and it's all going to be okay. But it really gets discouraging sometimes.
Hays has had a good day. His zantac seems to be helping- thank goodness. But now he's crying, letting me know it's time to eat!

May 5

Today was my dayto spend some quality time with Mason. we haven't had a lot of chances to just hang out lately, so my mom kept Hays this morning so Mason and I could do something fun. we went out to Washington Farms to pick strawberries, and we had a blast. We picked a big bucket of the most beautiful, ridiculously yummy strawberries (we're planning to make strawberry pie together tomorrow). Then Mason got to see all the animals in the little petting zoo. He got a big kick out of the goats, especially when they would head-butt each other! They had old fashioned water pumps for this kids to play with, and I like to never got him away from those. After the farm, we went to the park. He had a ball- right up until he fell in the creek. He was not a happy camper at the prospect of riding home soaking wet, and kept yelling, "it is not funny mommy!" (but it was) He was in much better spirits after he got some dry clothes on, and all in all, he had a great day.
Not so much for Hays. That poor kid has had some major tummy trouble. I don't know if it's gas or reflux or a combination of the two, but something was hurting him. He had to sleep upright in his swing last night because he cried every time we tried to lay him down. It made for a very long night. He's doing the same thing tonight, so Matt and I will probably be the walking dead by tomorrow. His pediatrician prescribed Zantac for him today, so hopefully that will help.
Will is still doing great. My sister held him for a long time today, so I know he was happy. and he is a big fan of his new bouncy seat according to his nurses. My sister said he was completely enthralled by it.
Well, Hays is quiet (for the moment), so I'm dragging my tired bones to bed before he starts wailing again!

May 4th

Today was another great day with Will. He was wide awake and my mom got to hold him for the first time. (That was one happy YaYa!) Now that he's awake a lot more, he needs toys so he won't be bored. I won't be back up there until wednesday, so we had to send Matt's dad on an emergency mission to acquire a bouncy seat with cool stuff to look at on it. He picked out an awesome one, and now Will should be set until I bring him a couple more things for his crib.
Hays had a good day as well. Brave Matt stayed at home by himself with Mason and Hays so I could go to Egleston with my mom. And both kids were still in decent shape when I got back, so yay for daddy!!
I'm sure a lot of you remember hearing about our sweet buddy Zach that passed a couple of weeks ago. There is a beautiful article about his family in the local paper that you can check out if you like. (Warning- it will break your heart!) The link is www.onlineathens.com and it's the first story that comes up.

Well, the pictures don't really do him justice, but I swear, Will is about the cutest thing on earth! He is a round little fat baby with the cutest little chipmunk cheeks. You just want to pinch them! He was so alert today and he looked the best I have ever seen him look. The coolest thing is, he smiles! On purpose! And boy, does that kid have a killer grin. I hadn't seen him in almost a week because I've been home with Hays. It's amazing the difference a week makes. Matt and I couldn't get over how huge he is. He's just over six pounds, but he seems ginormous. I guess that's because he started at 2 lbs. 14 oz. He has a round little belly and fat baby legs (he gets those from his mother!). I got to hold him for a long time today and he was just as content as can be. It was a great day!
Hays is still as good as can be. He is really a good baby (as long as someone is holding him). Matt's parents kept him and Mason today and he was great. He's starting to stir around now because it's almost time for him to eat. So I'm going to go snuggle my little cutie and be grateful to God for giving me three of the best boys a mommy could have.

May 2

Today has been a pretty good day. We took Hays to see the pediatric surgeon about his hernia, and he's scheduled for surgery May 20th. The cool thing is that since he has to stay overnight, they're going to try to put him with Will. It will be the first time the boys have been together since they were born.
Matt managed to stave off Hays' scream-a-thon by holding him for about an hour. I'm normally not a fan of holding a baby until they go to sleep, but I really can't let a four pound baby cry himself into such a frenzy that his apnea monitor is going off because his heart rate is too high. When he gets a little older, he'll have to cry it out. But for now, a little extra snuggle time never hurt anybody.
Will is doing well. He's had a good day and the poop situation is getting better. They've resumed his CPAP trials since he seems to be responding well to the methadone (little junkie!), and he's doing great with that. Matt and I are finally going to get to see him tomorrow, and I can't wait!!! I should be able to hold him tomorrow since he's already had his first trach change and everything seems to be going well. I don't know if holding him with the trach will be as scary as holding him on the vent, but I guess we'll find out.

Does this mean he has to go to rehab???

Get ready for the most pitiful thing you've ever heard. Poor little Will is on methadone. Yes, methadone, the stuff they give heroin addicts. My baby is a junkie. The last few days he's been very agitated and he's losing weight because he's pooping all his food out. They finally figured out that he's in withdrawel from morphine, so they put him on methadone. He's like a little quasi-crack baby! But he's feeling better and that's all that matters. The nurse said he'll probably be off of it by the time he comes home, and I'm like, good, because I don't really know where the local needle exchange/free clinic is, so I might have a tough time scoring his methadone! Poor Will, this kid just can't ever have an easy time of things.
Hays finally quit screaming last night around 1 am, two and a half hours after he started. Then his apnea monitor was going off every 10 minutes or so between 5-6 am. Hays has reflux and that can sometimes make babies hold their breath and that's likely what he was doing. So he was fine, but the monitor was still going off, and that thing is loud!!! I have discovered a pattern to Hays' crying jags. He has one period during the day where he's wide awake and ready to play. When he starts to get sleepy I put him in his bed, but then he won't go to sleep and starts hollering. I try giving him his paci and patting him, but no dice. He's overtired and can't go to sleep. He cries for so long that it's usually time for him to eat again. We feed him and hold him until he finally passes out. Anybody got any good suggestions for making him sleep before he's overly exhausted? This afternoon he started crying at 5:30 and he just settled down now at 7:30 (but he may start up again at any moment!) Advice welcome!