Our Anniversary

Today is our fifth anniversary. In honor of that, and since I have nothing new or interesting to report about the kids, I'll tell you the story of how Matt and I wound up together. (Which is, conincidentally, how Will got his name)
Matt and I have known each other since sixth grade. We went to middle and high school together, but we weren't friends or anything. The summer of 2000 was the summer before my last semester of college and I came home to do my internship in Atlanta. I was living with my parents and Matt was living with his while he was going to school. Needless to say, we spent as much time out of the house as possible! That meant we both practically lived at our friend Will's apartment. Will was one of our very best friends and he was lots of fun to hang out with (sometimes too much fun!). Will lived with his brother and another guy. Two other friends, Aaron and Eddie, spent a great deal of time there as well. So it was me and this crazy group of guys all the time. I was bound to wind up with one of them, and one night Matt just started looking cute to me. He kissed me a few days later, and here we are eight years later! I thought he would just be a summer fling, but he hung around and proved to be a really good, honest, supportive guy. Really good guys are few and far between, and luckily I was smart enough to hang on to this one. We dated for three years, and got married five years ago, surrounded by all those friends from that summer. Sadly, we lost our friend Will suddenly and unexpectedly a couple of years ago. Had it not been for him (and his apartment) Matt and I would never have wound up together, so we thought it fitting that we name one of our sons after him. So that's our story (at least as much as I'm willing to admit to in print!)

More crazy confusion from Egleston. Today I talked to the cardio-thorassic surgeon's people. I wanted to get an idea of the timeline for when Will would be big enough to have surgery, what the procedure involved, etc. Well, they came back telling me that he would not be the one to do surgery. If anyone did do it, it would be the ENT because he doesn't operate on kids who have a trach. They told us that his recommendation had been to not do the trach, let Will grow, then do surgery. This was the first we had heard about that. The only thing we were ever told was that the trach was the only option. Now, chances are we would have gone ahead with the trach anyway because we really needed to get the ET tube out. Leaving it in increased the risk of damage to his airway and lungs and it prevented him from being able to do anything but lay there sedated. And he has come a looooong way since he got the trach. Life is much better for him without the ET tube, so I think, in the end, we made the right choice. But it still would have been nice to have all of the doctor's opinions presented to us. And this brings me right back to the problem of hearing something different from every person I talk to. It seems like no one is communicating and there doesn't seem to be a single person that knows the whole story when it comes to Will.
But Will looks good. He's so alert and pretty content. He's sucking down his bottle like there's no tomorrow and they're really pleased with how well he's doing. If he keeps it up, we'll probably be able to avoid a gastric tube (fingers crossed!!) His kidney ultrasound came back fine. They think he was just a little dehydrated because he missed one of his feedings. He pulled out his NG tube, which delayed his feeding schedule, so he missed one that day. Dehydration in babies causes their blood pressure to go up sometimes.
Hays is still keeping us up in the wee hours of the morning. He didn't sleep much during the day today and he's pretty zonked tonight. Hopefully he'll be too tired for any 4 am shenanigans, and that will break the cycle. I'm praying it will, because I'm exhausted!!!

We had a fun day today. We went to the park with Zach's mom and big sister who is Mason's age. She and Mason had a big time and were too cute playing together. I am, as always, in awe of Zach's mama. Although she is struggling with the loss of her son, she is determined to have something positive come out of this. She continues to do incredible work for the March of Dimes and is working to set up a foundation in Zach's name. Her tenacity, faith and positive attitude are to be admired and we are praying for God to keep healing their family. Another way to support them is by checking out Jessica's online store. She does amazing monogram work, and has adorable dresses for little girls. Check it out at http://pigtailspolkadots.blogspot.com/
Will had a good day for the most part. Today's concern is that his blood pressure was a bit elevated last night, so they did an ultrasound of his kidneys and a urinalysis to make sure there were no renal issues. So far everything looks normal, but we'll have to get the all-clear from the renal docs tomorrow before we'll know for sure. I'm still getting conflicting reports from the doctors. Today the pulmonologist told me that he talked to the ENT about trying Will off of CPAP and she agreed. They were supposed to try that today, but I'm not sure if they did because they were moving the TICU today and it was pretty crazy down there. The pulmonologist also told me that he discussed the surgical option with the ENT, but he said he doesn't think it will be necessary because he thinks Will's airway will strengthen as he grows. When I pointed out that that was the complete opposite of what the ENT told me, his answer was "Well, no one really knows, we can't predict the future." Well, duh, but it would be helpful if the doctors could at least agree on the best plan for treatment. Arrrggghhhh. This is so frustrating!!!!!

May 28

We are definitely going to have to get all of Will's doctors together to make sure that everyone is on the same page. Today his pulmonologist told me that he wants to try taking Will off of CPAP for 30 minutes to see how he does. It's the first step in weaning him off of ventilator support, but we're concerned that it's too soon. He was going to consult with the ENT, so I'll be anxious to hear what they decided tomorrow. I'm also concerned about his trach. It still has an awful lot of drainage that smells pretty funky. They checked it for infection today, so I hope they'll get lab results back tomorrow. On a good note, he's doing really well with his bottle feedings. We're excited about that because we really don't want him to have to have a gastric tube.
Hays has a fun new trick of screaming his head off after his 3 am feeding. He'd been doing great about going right back to sleep after his feedings, but the last two nights he has just fussed and fussed. He cries every time the pacifier falls out. And he's hooked on these stupid soothie pacifiers that they give them in the hospital. I don't know why babies like them so much because it's almost impossible for them to keep the darn things in their mouths. I did some research online and found the things called "wubbanubs." They're basically small beanie babies with a soothie pacifier attached to them. They provide just enough support to keep it in the baby's mouth. So far it has worked pretty well, but we'll see if it passes the 3am test. I got a green frog for Hays and a red dog for Will, so hopefully they will solve our paci problems.
Finally, for the bizarre fact of the day- stress causes production of breast milk to diminish, so my supply has been dwindling. I talked to the pediatrician about ways to increase it, and he suggested an herbal supplement called fenugreek. Here's the weird part- it makes your sweat and pee smell like maple syrup! How crazy is that?? So now I smell like a stack of pancakes. Just call me Mrs. Butterworth!!!

May 27

I finally talked to Will's ENT today. She told me that they really don't know the extent of the weakness in his entire trachea. She said that it may just be the negative pressure created by him working so hard to breathe that causes the upper airway to close up some. It may be the reason that he's still requiring CPAP to keep his airway open. Either way, it's not really affecting his condition or prognosis. What isn't so great is the severity of the tracheal malacia where the vascular ring was. The airway is narrow and really floppy in that spot. They initially thought that he would outgrow this, but now it's looking like it's really too weak for him to outgrow it within a couple of years. He may outgrow it, but it will take a lot longer than we initially thought. That is discouraging, but we did some encouraging news. The cardio-thorassic surgeon had come to the conclusion that surgery was probably not going to be a good option for Will. However, after reviewing his latest bronchial scopes and evaluating his condition, he thinks he might have a surgical solution for Will. It basically means he will rebuild the damaged part of his airway. If it works, he'll be able to keep his airway open and won't require the trach or anything. He's too small for the surgery right now, but with a few months' growth, he should be ready. It's major surgery, and if we thought he would outgrow this on his own we wouldn't consider it. But at this point it's looking like his only option. The doctor thinks without the surgery he will have the trach most of his childhood or possibly all of his life. When the time comes we'll have to see if the ENT, pulmonologist and cardio-thorassic surgeon are all in agreement that this is the best course of action for Will. If they are then I guess we'll have to trust their decision and go for it. At this point we're just praying that the surgery will be a viable option and that it will solve the problem so Will can get on with a normal life. Say your prayers that the answer will be clear to us when the time comes.
Hays is doing great. He went to the doctor today and he weighs 5 lb. 9 oz. He's healing beautifully from his surgery and the doctor says he looks great. He's growing well and we don't have to back to the doctor for a whole month. Thank goodness!

Happy Birthday Daddy!!!!!!!!!!!!!

Today I finally got to talk to a doctor at Egleston! Yesterday I was telling the nurse that I really felt like information regarding will's care had been falling through the cracks. We had been depending on updates from the nurses and we just weren't getting all the information we needed. I'm not knocking the nurses- they are great and take excellent care of the kids. The problem is that there are a lot of them and you don't always have the same ones. They don't necessarily know when something has changed about Will's care, therefore they can't relay that change to us. But even though it's not their fault, we have learned that we can't rely on the nurses alone to get the full story on Will's condition and care. Now that he's moved to the TICU I've asked to get a report from the attending physician if there are any changes at all. So today I got a call after the doctor did rounds to let me know that they had made small changes regarding his feedings and breathing treatments. I felt much better knowing that they're going to keep me informed. My parents went to visit Will today and they said he looked great. And Matt's dad said that he had a great visit with him as well.
Today was Matt's birthday- he's 30!!!! We didn't do anything huge, but we certainly celebrated. Mason told me last night that he wanted to make a special breakfast for Daddy's birthday, so this morning we made happy-face pancakes. Then Mason unwrapped all of Matt's presents for him! We had a birthday dinner at Matt's mom's house along with my family and ate tons of steak. I had asked Matt if he wanted me to throw him a party since 30 is a pretty big birthday, but he said no. I told him fine, but don't think that means that we're not partying for my 30th in August!

May 25

We went to see Will today and he seemed to be doing well in the TICU. I got to see his home ventilator/CPAP maching for the first time and it's not that bad. It's not huge or overwhelming or anything. I also met a mom with a trached baby today. Her son is almost a year old and it was really helpful to talk to her. She said that caring for a child with a trach is not much different that caring for any baby. She said that it was easier and less scary than she thought it would be, so that was encouraging. She said that she and her husband take her son places and that it's not incredibly difficult to get out of the house with all the necessary equipment. She gave me some good advice about home health care, dealing with the insurance company, etc. I really felt much better after talking to her. She told me something that I already knew, but it was still good to hear- basically, you're going to be fine and it's all going to be fine. You will find the strength to do what you need to do because you are his mommy and you will do whatever you need to to take care of him. And we will.

Where a kid can be a kid

Mason made his first visit to Chuck E. Cheese today. He had a great time and played lots of games. I will say that the pizza has improved since my last foray into the noisy world of the pizza rodent, though not by much. Even though the cuisine was nothing to write home about, the time we spent with Mason was great. Hays stayed at my parents' since he's a little young for Chuck E. Cheese.
He had a good day, too. He hasn't needed any tylenol today and has been pretty content all day long. Will, on the other hand, was really cranky today and last night. I'm not really sure why. His nurses said he didn't seem to be in any pain, he was just fussy. They moved him to the TICU (technology-dependent ICU) today. It has kids of all ages who require stuff like ventilators. He'll be there until he's ready to come home. This is a good place for him because they'll be able to teach us everything we need to know about having a child on a ventilator.

May 23

Hays has felt much better today. He wasn't nearly as fussy and it was a much easier day. He's been sleeping for close to four hours now and I'm about to have to wake him to feed him before bed.
Will had a good day also. I talked to one of the neonatologists and we're setting up another conference with his doctors that we've actually met. She did tell me one thing that is kind of distressing. She said that they discovered that his whole trachea was weak rather than just the one area when they did a scope at the end of April. It's now the end of May and this is the first we're hearing about it. What's up with that? We're counting on the doctors to keep us informed and now I'm wondering how many details central to my child's care are falling through the cracks.

May 22

It has been a long day with Mr. Hays. I think he's pretty sore from surgery and he hasn't let me put him down all day. He's okay if he's being held, but the minute we put him in his bed or swing he just cries and cries. It was so pitiful tonight that I called the nurses at St. Mary's to see if they had any ideas that I hadn't tried yet! He finally passed out from sheer exhaustion, and he's been asleep for the last hour or so. We'll see how long it lasts. It may be a loooooooong night!
Will had a good day. My dad went to see him and said he looked great. He did really well with his bottle feeding today, so that's promising. They've had to move the NICU temporarily because of construction, so they've relocated the babies to the cardiac ICU. Will has a private room (swanky!) with a TV in it, so today when my Dad got there, Will was watching TV! I'll have to bring him some Baby Einstein. We don't want him rotting his brain, so we'll have to get some educational stuff in there!

May 21

Big Will!!

Hays' hernia surgery went well. It turns out that he had a hernia on both sides, so they were able to fix both at the same time. He was also circumcised, so he's not exactly a happy camper tonight. He did really well last night because he was pretty doped up on pain medication, but now he's down to just tylenol and he's having kind of a rough night.

We met with all of Will's doctors today and we really left with more questions than answers. The ENT, who we have not worked with before, told us that Will's entire trachea is weak and floppy rather than just the small area where the vascular ring was. This is completely different from everything we've been told all along, so I'm not sure if she's wrong or we are, but I have to get some more clarification. The pulmonologist told us that she thinks he's going to require ventilator support for a while, maybe a year or more. It's pretty discouraging. We don't want Will to have to lay around hooked up to a machine. And we're scared to death about how much care he'll require. We're going to have to have a small hospital in our house and I'm going to have to know how to do everything that he needs. it is a daunting challenge. I know we'll figure it out and rise to the occasion, because really, what choice do we have? But it's one of those days where I just want to ask God, "Is this a test? What can possibly be the lesson behind all of this? Why does my child, our family have to go through this?"

But even in the midst of the fear, the exhaustion, the screaming baby, I know we are immeasureably blessed. When I went in to see Will this morning, he was asleep, but when he heard my voice, he smiled- that is a blessing. Holding Hays when he is sleeping peacefully, knowing that he is absolutely secure in his mother's love, that is as close to God as you can feel. Mason's spontaneous hugs and having him tell me, "I love you, you are the bestest mommy in the world," well, you don't get much luckier than that. Pray for me that I remember how blessed I am in the dark hours. Pray that I can sustain my faith that there is reason for all of this, that God's not just messing with me.

New pictures!

Sleepy Will

Wide awake Hays

Nyah, Nyah!

Will passed his swallow test!! He didn't aspirate any of the milk. However, he did get so freaked out by the fact that stuff was coming out of the bottle that he got hysterical and they could barely calm him down. So the good news is, he can eat. The bad news is, it's going to be tough to teach him how to do it, but he'll learn.

Today was a good day with my other two monkeys as well. Mason and I took Hays for his first outing- we went to get ice cream. (Well, Hays was really just along for the ride) We just had a really nice, relaxed day together. We went for a walk around the neighborhood this morning and Hays loves to ride in his stroller. This afternoon we all just hung out in the backyard where I got these very adorable pictures of him. (I was told by several people that pictures were long overdue! Sorry guys!)

Tomorrow we head up to Egleston for hernia surgery. Everybody think good thoughts that it goes smoothly and he recovers quickly.

May 18

I went to see Will today and he turned blue three times while I was holding him. He was gassy and I think his stomach was hurting. He would start crying and we wouldn't be able to calm him down, so he would stop breathing. Two times he recovered on his own, but one time they had to bag him for a minute to get him breathing again. He better cut that stuff out. I can't bring home a baby that quits breathing when he cries!
We're trying to get Hays on a schedule, and so far it's going pretty well (knock wood). He was staying awake too long and then he couldn't fall asleep even though he was exhausted and he'd just cry and cry. Now we're putting him down for a nap when we think he's ready, and so far, it seems to be working. Hopefully our progress won't get derailed by his surgery this week!

Sunday morning

Well, we had a great time at the wedding. The bride looked absolutely beautiful and I had so much fun dancing with my college friends and my sister. (Our husbands stood on the sidelines and looked kind of embarassed!) Yesterday was a banner day because I got my first real smile from Hays!! He was so cute. I was talking to him and he looked right into my eyes and then smiled. My heart just melted! And for the first time ever, Matt's dad held Will yesterday. Budda visits him every day, but he was an old scardey-cat and wouldn't hold him, but he finally overcame his fear of the seven pound baby and held him!
Another exciting thing for Will is that physical therapy is starting to work with him on bottle feeding. He's pretty confused at this point! He'll start sucking on the bottle, but then when milk comes out he gets kind of freaked out by it. They're going to do a swallow test Monday. That's where they add some dye to the milk and then do a scan to make sure he's not aspirating any of it into his lungs when he swallows. Hopefully he won't have any problems because we really don't want to have to go the feeding tube route.

Saturday morning

We got in way too late for me to update last night. What can I say, when they let us out of the house we party like rock stars!! (incredibly tame, boring rock stars) Matt and I made a very long trek during Friday traffic out to Alpharetta for my best friend's rehearsal dinner. I got to see some great old friends from college, had an excellent dinner, and a bit more wine than I really needed! Thank goodness my wonderful baby slept like a champ and went right back to sleep after eating. Otherwise I might have been hurting this morning! We get another day of sweet, sweet freedom today for the wedding, but then we'll probably never get to leave the house again.

May 15

Hays is the baby that never sleeps!!! He was up most of the day and never slept longer than an hour. I think his stomach hurts, but dang if I know what to do about it. He's already on Reglan and Zantac for reflux, and we're giving him simethicon drops for gas. But nothing seems to help except holding him and patting his back forever. This kid is wearing us out!
Will, on the other hand, was completely zonked out the entire time I was at Egleston. I held him and loved on him, but he never even opened his eyes. He got mad and yelled when we did his trach care, but he never really woke up. Little stinker. At least he was content. We're going to meet with his doctors next week to get a full update on the plan for his treatment, discharge, etc. It will be good to have a clearer picture of what to expect with him.
Matt and I have a big weekend planned. My best friend is getting married to a guy that I grew up with (I set them up on myspace!) on Saturday. I was supposed to be a bridesmaid, but had to back out when I found out I was expecting the boys. It's awfully hard to get fitted for a bridesmaid's dress when you're hugely pregnant with twins! So I'm doing a reading during the ceremony instead. Matt and I get to do all the fun wedding stuff this weekend. We get to be child-free for a few hours tomorrow for the rehearsal dinner and then Saturday for the wedding. Woohoo!!!!

May 14th

I didn't update last night because I was asleep on the couch by 9:30!! There wasn't a whole lot to report. The bit of good news came from the pediatric pulmonologist that saw Will. He told my dad that he's seen lots of kids just like Will who are now perfectly healthy teenagers. He sais he thinks Will will be done with the trach by the time he's a year old. God, I hope so! Hays was a pretty sleepy boy all day. I think the past couple of nights of being wide awake at 4 a.m. caught up to him. I had to go to the doctor because my ears were so full of fluid that I can't hear anything. Everything kind of sounds like I'm under water! So now I'm on steroids and a decongestant to clear everything out. Matt better watch out for the 'roid rage!

May 13

Today has been a long day since it started around 4 am. Hays has been great about getting up to eat in the middle of the night and then going right back to sleep. But last night he decided to be wide awake after his 3:30 feeding. He was awake longer than he needed to be today and is pretty worn out. I hope he'll sleep really well tonight. He went to the doctor today for his two week re-check and he's looking good. He weighs 5 lbs. 2 oz, and the doctor says he's doing exactly what he needs to be doing- eating, sleeping, pooping and growing!
Will had an episode this afternoon. He apparently got fussy when they put him back in his bed after my sister held him, then he clamped down and stopped breathing and they had to bag him for a while. The doctors and nurses aren't particularly concerned. They said he was just being a cranky baby and decided to hold his breath for a while. Crazy kid!
Mason had his last day of preschool today, and I am very sad! I don't know how we'll keep him amused all summer. Luckily, some of the other moms and I are talking about getting a weekly playdate going. That would be great because Mason really has a great time with these kids and he would really miss them over the summer.
Now I'm going to shoo my crazy cat out of Hays' car seat, since she seems to think it's a lovely bed just for her, and then I'm headed to bed!

May 12

I started learning how to do the whole trach care thing today. I'll tell you what, it was kind of a trial by fire. He had to have his trach tube changed to a different size, so I wasn't just learning how to clean it, I was also learning how to change it. It's not really difficult, but it's pretty intimidating. I'm really glad that we're going to have in-home nursing care when he comes home. He's going to require a lot of attention, more than I can handle with two other kids to look after. I know we can do what needs to be done, but I need to have another pair of eyes and hands to ensure Will's safety. But we'll have the help we need and we'll get through it. Will was great while we were cleaning him up and doing the trach change. He wasn't the least bit upset or agitated. In fact, he slept through most of it. What a good baby! He was wide awake when I first got there. And he never took his eyes off me the whole time I was holding him. He knows who mommy is, even though I can't be there every day. I'm sure it's just that he knows my voice from listening to the stories I recorded for him every day. But whatever. He knows his mommy and that's all that matters to me!
Hays was a cutie pie tonight. He was wide awake and in a great mood this evening. Mason and I spent a long time just talking to him and playing with him and he seemed really content and interested. I think some real smiles are not far away, and I can't wait!

Happy Mother's Day!!

It has been a nice day. We went to my parents' house for lunch with my sister and her husband and Mason had a big old time. Matt and my dad were smoking cigars and Mason was blowing bubbles. My dad amazed him by blowing a bubble with smoke inside it. Mason thought that was the coolest thing ever! My mom and I were like, oh this is great, the little kid playing with cigar smoke! But I have to admit, it was really cool looking!
Mason gave me lovely mother's day gifts, but the best one was the card he made with glitter pens where he wrote his name all by himself. Hays was his usual sweet self, and my sister said Will looked really good when she went to see him. She didn't get to hold him because he had been fussy and they had just gotten him settled down. I'm going down tomorrow and I'm going to start learning trach care. I figure the more I practice, the more comfortable I'll be with it when he finally comes home.

May 10

Matt and I went to see Will today, and the little monkey slept the entire time! He was up a good bit the night before, so I guess he was just having a sleepy day. But I missed seeing his cute, wide-awake face. He had to get his two month immunizations today, so I know that was no fun. He no longer needs any IV fluids, so they took out his pickline. Now he only has the vent tubes connecting to his trach. No more IVs or arterial lines! That's one step closer to home. He's up to two full ounces per feeding and he's tolerating it beautifully. That will help him grow bigger and stronger so we can get that little airway fixed. We are so anxious to have all of our boys at home. This will be a wonderful mother's day because I get to celebrate the fact that I am the mother of three awesome little boys, but it will be sad since we're missing one.
Hays has had a pretty good day. We've upped his feeding to 2 1/2 ounces per bottle and he's drinking the whole thing almost every time. He's getting so big, but he's got a ways to ge before he catches up with big Will!
Hope all of you wonderful mommies have a great day tomorrow!!!

May 9

Will had a good day today. He's doing well on his feeds- he's up to almost 2 oz. per feeding- and he weighs 7 lbs. 5 oz. He's huge!!! Matt and I are going to see him tomorrow, and we can't wait. Hays weighs in at an impressive 5 1/2 pounds, but he's still a little squirt! He had to get tests done at the hospital today, and he didn't think much of that. It was pretty crazy trying to corral both Mason and Hays at the hospital. Luckily my mom came along to help. We paid a visit to the NICU so that we could see our beloved nurse, Lisa. She was happy to see Hays and said he looked great. I was proud to show that I hadn't broken him or anything over the past week and a half. It's weird, but I miss going to the NICU. I'm so glad to have Hays at home, but I miss seeing the nurses every day. The NICU is its own little world, and I miss knowing what's going on. I wonder about all the babies and how they're doing. But I really miss talking to all the great girls up there. They are all hilarious and became good friends. Luckily we're talking about a girl's night sometime soon!

May 8

Today has been pretty uneventful, but that's okay. No news is good news, right? Will's had a good day. My sister said he was super-cute and very alert when she went to see him. She got to hold him for a long time, and he was awake the whole time. Thank God for my sister. It makes not being able to be there all the time so much easier. I know that he's getting plenty of Aunt Ninny love, which is just about as good as mommy love. Mason and Hays got some Aunt Bea love, and they were thrilled. You've got to be impressed by a 16 year old girl who wants to come hang out with her little nephews after school. Elizabeth and Paige are definitely the best aunts on the face of the earth!
Hays has been good today- no colic spells (knock on wood!) I have to take him back to the hospital tomorrow to have another PKU test done. It shouldn't take long since they just have to draw some blood. But it will certainly be an adventure trying to take both boys somewhere, and to a hospital, no less. Wish me luck!

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!