Here's a little Hays and Mason cuteness for y'all. I have some good lookin boys if I do say so myself! Hays is getting so big. He's still kind of scrawny, but he's filling out more every day.

We're proud of Mason today. He's really into superheros right now, and he found this Batman toy he wanted. Matt and I told him we weren't going to buy it since he just had a birthday and got plenty of new toys. But we told him he could do some jobs around the house to earn money and buy it himself. So all week he's been doing extra little chores and he earns a dollar for each of them. He finally earned his last dollar today and went to buy his toy. We were really proud of him for working and saving to get what he wanted.

Will had a good day, except that he spit up all over my sister when she went to see him! I'm going to spend the night at the hospital tomorrow so I can spend a full day and night dong all of his care. That way if I have problems or questions doing it all on my own, I'll have backup. It's just to get us better prepared to take him home. Matt will be spending the night later this week or next week. I kind of have to laugh about that, because come on, when will Matt really be doing all of Will's care by himself? I mean, he's a good dad, but I can't see him just up and volunteering to go solo on the childcare for a night! Maybe he'll to a really awesome job and I'll decide to run to Vegas with my girlfriends for a weekend. Yeah right!

I love my minivan!!!!

We finally have some new pictures of Will! And is he ridiculously cute, or what? That boy has the most adorable smile. Matt and I did his trach care together today with no help and we did a great job. It went quickly and smoothly, and I think we're going to be trach champs by the time it's all said and done.

We had a big, exciting day today. I officially became a member of the mommies with minivans club. Yup, we gave up all of our cool points and bought a minivan. And I hate to admit it, but I LOVE it!!!! It's a 2007 Chrysler Town and Country, and it's fabulous. I don't care that I'm totally uncool, it is awesome. And we really had no choice. How else could we haul around three kids and medical equipment?

We still don't have a definite answer on when Will is coming home, but his doctor says she thinks it will be more than two weeks. We've finally settled on a plan for his bottle feedings. He's currently taking as much as he can over a ten minute period. He took 20 cc's in the morning in about three minutes and would have taken more. Last night he took 48 cc's in ten minutes. They'll evaluate him to see if they should increase the time or the number of feedings so he can slowly work his way up to full bottle feeds. They're giving him until the middle of next week to see whast kind of progress he makes before we make a decision on the gastric tube. If he shows good progress they'll likely send him home with an NG tube for a little while until he's up to full feeds. They don't really want to send him home with the NG tube because it can cause problems, but if it's only going to be for a short time it's better than doing an invasive surgical procedure.
The doctor still has to discuss things with the trach nurse, the discharge coordinator and the other nurses before she can give us a planned discharge date, but she said at this point we should not cancel our beach reservations. I was really upset at the thought of not going to the beach, because that is what truly signifies summer to me. My whole family goes with several other families at the same time every year. And we've been doing this since I was a little girl. St. Simons is my favorite place on earth- I've told everyone to scatter my ashes down the beach when I die so I can be there forever! But yesterday morning I had an epiphany. If we don't go this year, it's not a big deal. There will be other years, and not going will mean that our baby is finally home. Our boys are all together and we are a complete family under one roof. I've been very scared about bringing Will home, but yesterday I finally felt the assurance that everything will be fine. we can do this, and even though there will be times that things are hard, there will be more times that everything is fine and normal (as normal as we ever get!)
I did Will's trach care yesterday and it went beautifully. I was confident that I knew what I was doing and it was easy. We got it done in 10 minutes without a hitch. Will was calm and relaxed and I felt infinitely more assured about my ability to care for him. It went so much faster and smoother with me doing it than when a lot of the respiratory therapists do it. The RT helping me said that I did a great job. She said she was impressed with my confidence and speed and thought I would have no problems at home. Let's hope so!

we're trying to get everything in order for Will to come home, but man, that is a daunting task. It looks like they're going to be sending him home in a couple of weeks. The big question is exactly when. We have a trip to the beach planned that was scheduled before the babies were born. We were going to take Mason and Hays down for a few days since my in-laws would be around to look after Will, but know we think they might send him right before. We want Will home, but we really don't want to bring him home with an NG tube. We think that another week or so might increase his chances of coming home on full bottle feeds. Plus, quite honestly, we could really use a few days break before he comes home. having Will home is going to add a lot more responsibility to an already crazy household. We'll have a nurse to help us, which is good, butI'm still the mom. I'm still the main person who has to look after all three kids. And a few days of lying in the sun bwtween the craziness of the hospital and the craziness of bringing another infant home would be lovely. Maybe I'm a crappy, selfish mother, but it is what it is.
We're trying to finish up our trach and ventilator training, get squared up with the home health companies about nursing care and equipment and just get the house ready. Will has to have so much gear that we're not going to be able to put him in the room with Hays. We're setting him up out in the playroom. It's good because it also provides a space for the nurse to hang out when Will's sleeping so we're not all on top of each other in this little house. Plus we can all hang out together in the playroom, we can't all fit in the bedroom! But there is a lot left to do befoere we bring that little guy home.
And now for a hilarious Mason story: He's been at bible school this week and last night at dinner Matt and I were asking him what he had learned. He thought for a moment and told us, "We learned about Jesus and how she fed all those people with five rolls." We have obviously been slacking off in our religious training since he thinks Jesus is a woman! The informed us that "Jesus helps God make the babies because we have one baby at home and one in the hospital." Finally, he told us that for snack they had "n m n's, printzels, and goldfish." That boy is a hoot. But he's a sweetie. Today they made prayer pails, which are little buckets with popsicles sticks in them that have the names of people they want to pray for. Mason listed mommy and daddy, his friends, his stuffed dog, Buddy, and Will and Hays. Too cute.

I didn't post last night because I was watching a hilariously bad movie rendition of Anee Rivers Siddons "The House Next Door." It was so awful that I could not tear myself away! Hays went to the doctor for a checkup yesterday and he weighs 7 pounds!!! He's also 20 inches long, which means he's grown 4 inches since birth. Of course, he's still not even registering on the growth charts. But nontheless, he's growing like a weed. The poor little guy had to get two shots, so he slept most of the day after that. He was supposed to get four shots, but the doctor thought he was just too small to tolerate that well. But everything looks good. The doctor was pleased with his head control, smiling, cooing, reaching, etc. They gave me a sheet about what 2-4 month old babies should be able to do. One of them was "sleep 5-6 hours at a stretch at night." Ha! The most we've seen is four. I showed the sheet to Hays, but I don't think it worked!
Will had an okay day. Not quite as good as the day before, but much better than the day before that. He had to come off his CPAP trial early and he only did a couple of bottle feeds. The doctors think that they might be pushing him too hard and causing him to backslide a little. They're going to slow things down a bit. It's better to progress more slowly than to rush things and wind up going backwards.

Hallelujah, Will has had an awesome day!!!!! Apparently he was just worn slap out yesterday. Today he was breathing well, eating better, and did great on both of his CPAP trials and his trach collar trial. My sister and Matt's dad both went to see him and reported that he was smiley and happy. The resident doctor said that he did a complete turnaround from yesterday and we are so relieved!
My sister and her husband came down this afternoon and we had a nice dinner over at my parents' house. Hays was good, which wasn't surprising considering the fact he took a four hour nap this afternoon! He was awake for a long time this morning so he was all tuckered out by naptime.
Mason starts his second round of bible school tomorrow. He's going with his best buddy, Bo, from preschool. Bo's sweet mama is going to cart my little monkey back and forth along with her three kids. I have yet to determine if she is a saint or a glutton for punishment, but either way, I'm grateful to her!

Two Steps Forward, One Step Back

Will hasn't had a great day today. He was very irritable this morning and he's having some trouble breathing. He's having to work really hard to breathe and you can see his chest just pulling every time he takes a breath. They had to cut his CPAP trial short this morning because of it, and they didn't even try his trach collar trial because they didn't think he would tolerate it. He also didn't do very well on his bottle feeds. He wouldn't take any of the first two, but he took 25 cc's out of a 45 cc bottle for me, then took 15 at his last feeding. The doctors think he may be getting some kind of little bug, but for right now they're just watching him closely and waiting to see what shakes out. We're praying that he's just having an off day and that he's not experiencing any major setback. Everyone keep your fingers crossed and say your prayers for sweet Will.

Everyone knows that you have to be careful about what you say in front of kids. I try to be diligent about watching my language, but I have to admit that the occasional mild epithet slips out in front of Mason. They are bound to repeat the things you'd rather them not, and today was no exception! We had just walked out the front door to go to the library when I noticed that Mason's shirt had something all over it. I went inside to grab a clean one and left him and Hays on the front porch. Not realizing Mason was following me, I didn't hold the storm door for him and it closed on him. It didn't hurt him, but it did make him mad, and he yelled "You're mean! You let the damn door close on me!" Oops! All I could do was laugh. A better mother would probably have corrected his language, but I was laughing so hard I was almost crying. Oh well, at least we weren't at church!
Will had a fantastic day today. He took 48 cc's today in 10 minutes from his bottle (that's about an ounce and a half). So they're giving him 45-50 cc's four times a day from the bottle and giving him the rest through his NG tube. This is an incredible start, and hopefully he'll be able to increase that volume soon. He has to be able to take 80 cc by mouth eight times a day to get rid of the NG tube, but at this rate it shouldn't take long. Let's hope he can keep this up because it's a huge step on the road to home.

We finally had our meeting with Will's doctors, and the news was encouraging. First, the ENT did a bronchial scope and said things look a little better. His airway has grown a little, and the bigger it gets, the less of a problem the floppy spot will be. She said that small area is always going to be a little floppy, but as his airway gets bigger, the floppy part won't close it off. The pulmonologist said that he's doing really well on his trach collar trials- they've increased him to a two hour block every day. He said that our goal is to continue to increase that time off the vent until he only needs to be on the vent at night. Hopefully we'll be able to do this over the next several months. He said that if everything goes really well, we might look at taking him completely off the ventilator next spring after cold/flu/RSV season has passed. After that, we begin working towards getting the trach out. The ENT said that it's extremely rare for a child to have the trach out before they're two, but that Will shows every indication of being on the path to having it out around two years old. That is excellent news!! It's still a ways away, but two years goes by quickly. Our next big milestone is to continue to increase his bottle feeding until he can take all of his nutrition from the bottle. Tomorrow, they're going to allow him to take as much as he can over a 15-20 minute period, and that will set the volume of his feeds for now. Let's hope he does well and takes a lot! More exciting news is that the doctors want to hold off on the gastric feeding tube for now. If he does well on his bottle feeds, he may only need a feeding tube for another month or two and they think that a G tube would be unnecessary. So, fingers and toes crossed! The pulmonologist said that Will can come home after we get all the feeding stuff figured out and we have enough experience with trach care to feel fully comfortable with it. Hopefully just a few more weeks.
Will was a really happy boy today. He was very smiley and didn't get the least bit upset when the ENT did the bronchial scope. We were talking about how far he's come over the last couple of months. I don't always get the full perspective on his progress, but I have to remember that this time two months ago he was intubated, sedated out of his mind. He barely opened his eyes, and when he did, he couldn't focus them. We had to have three people just to get him out of the bed so we could hold him. Now he's alert and happy. I can pick him up by myself. He's just a regular baby, albeit with a few extra tubes! He has really made incredible strides and we are so proud of his progress.
Hays is starting to take a little formula (preemie formula, not the crazy-expensive crap). I'm mixing it with breastmilk to make the transition easy. It's just getting too hard to pump with everything going on, and it will be even harder when Will comes home. But hey, four months of breastmilk is a good start. I think he'll probably gain weight faster on formula, and that will be a good thing. He's still a scrawny little chicken!

Oh man, we had such a good time today. My oldest friend, Ricky, and our great friend, Lisa, came to visit this afternoon. Ricky and I have been friends since we were seven, and he is now an actor/director, all around fabulous man about town in New York. Mason absolutely adores him because Ricky has always had the energy of an overgrown puppy. Seriously, he's like a giant six year old. So Mason was in hog heaven. They were doing pratfalls all over the house, then the two of them got out in the yard and played in the sprinkler. Meanwhile, Lisa and I got to gossip and laugh at Ricky's antics. The afternoon flew by, and I hated to see them go!

Hays made his debut at my mom's breakfast club this morning. I was proud to show him off to a group of lovely ladies that have been incredibly generous with their prayers and gifts. They were very excited to meet Hays and they greeted him with applause and cheers!

I went to see my little Will monkey today, and he was doing great. He was in a good mood and just as cute as can be. He's making really good strides as well. They've increased his trach collar trials. He's doing an hour in the mornings and 30 minutes in the evenings. He's bumped up his bottle feeds to 15 cc's three times a day. And he took all 15 in less than a minute today and was looking around for more! They're also running his NG tube feedings over a shorter period. They were running over an hour and a half, but now it's running over an hour. We finally have a meeting scheduled with all the doctors on Thursday, so we should be able to establish a definitive treatment plan,as well as some idea of when he's coming home. I'm ready to have him here. I need to be able to be with him every day, and I really think he'll thrive when he's home with his family. The results of his pH probe came back normal, so that's more good news.
Hays is still doing great. We took him to the Cracker Barrel tonight for dinner, and he had a big old plate of pancakes. Okay, not pancakes, but he did suck down a bottle like there was no tomorrow. He likes going places. I guess he enjoys having something different to look at.

So we're all fancy now compliments of the lovely Jessica Kirk. I swear, there is nothing that girl can't make cute! I know I've plugged her website before, but she's added more adorable stuff, so check her out at http://pigtailspolkadots.blogspot.com/
Will had a good day today. My parents went to see him and he was a happy boy. The physical thereapists are working with him and they left a list of exercises to do with him. they also posted a note telling his nurses to lay him down facing to the left. He prefers to have his head facing right, and they generally lay him down that way. The problem is, his head is starting to get flat on the right side! They have to alternate him so his skull doesn't become misshapen. If it does, he would have to wear a helmet to reshape his head. The kid has got enough going on without having to wear some goofy helmet! He did an amazing job on his bottle feeding today. He took 15 cc's both times with no problem at all. He had been taking 10, so this is a big step. His neck is still looking kind of rough, so they're bringing in the ostomy nurse to look at it again. I personally think it's because they haven't been as careful with his trach care as they need to be.
we're still trying to get a meeting with all of his doctors. It was supposed to be tomorrow, but they haven't been able to get in touch with the ENTs, so now we're trying for Thursday. Lets hope we can finally get everyone together.
Hays had a good day. I think his stomach is getting back on track. He's really getting on a schedule (finally) and that helps the day move more smoothly. Now if I could just get him to sleep later in the morning. He's up between 5:30 and 6. I can usually feed him and get him to go back to sleep in his swing so I can catch a few more winks on the couch. But the days he doesn't are incredibly looooong!
Lastly, proof that Mason is watching too much TV: You've probably seen the lysol commercial where it says something like "If you're using a dirty sponge, you might as well be doing this," Then it shows a woman wiping down the counter and refrigerator handle with a piece of raw chicken. (blech) Well, tonight I had some chicken breasts out as I was getting ready to fix dinner. Mason looked at them for a minute, then said "hey mommy, you might as well be doing this." Then he mimed cleaning off the kitchen door handle with the chicken! Nice, right? Oh well, maybe he has a future in acting!

Happy Father's Day! Matt had an exciting day of going to Egleston to see Will and installing a new storm door (with Mason's help). Woohoo, let the good times roll! Will was doing really well today. He's doing two 30 minute trach collar trials a day, but today he did one for an hour. He wasn't actually supposed to, but his nurse forgot to take him off of it- which really inspires a great deal of confidence, let me tell you. Since she was already 15 minutes late, she decided to let him go the full hour and he did great. Hopefully he will continue to extend the time. That's just proof that his airway is getting stronger. We should have the results of his pH test tomorrow, so maybe we can get some answers as to whether or not he'll need the stomach wrap.
We're still having some colic issues with Hays. I'm not sure if it's transitioning back to breastmilk or what. I'm going to give it a couple of days, then I'm just going to have to have a pow-wow with the pediatrician.

It's been a couple of days since I posted. I didn't really have anything to report on Thursday and last night I had another girl's night. Two Fridays in a row- look out!! Last night I went out with Zach's mom and a couple of the NICU nurses. We had a great time and stayed out ridiculously late. That is a fun bunch of girls!
I had to give up on the absurdly expensive formula for Hays. It was upsetting his stomach way too much. His doctor said to swith him to the other brand of this formula and give him karo syrup twice a day to keep him from getting constipated. I'm not convinced that he really has a milk allergy and needs this formula, so for now he's back on breastmilk. If he seems to be having trouble with it, then I'll try the doctor's plan, but so far he's fine.
Will's doing fine. They are doing the pH probe on him to check his reflux. They have to put a tube like his NG tube down his nose and esophagus to see how bad the reflux is. My mom was down there with him yesterday and she said he really didn't seem to mind it too much. I was concerned that he would have really bad reflux since they took him off all his reflux meds for this test, but he's been dong fine. Hopefully he'll be able to avoid the stomach wrap procedure.

Well, I changed Will's trach today and he's still alive, so I guess you can call it a success! Actually, it wasn't that hard. A little scary, but not particularly difficult. I think we'll be able to manage it when we finally get him home. I talked to his case manager about trying to get a meeting with all of his doctors so we can finally come to a unified idea of his condition and treatment. His trach nurse is also going to work on getting the doctors together, and to get better communication between us and the doctors. I was not happy today when we discovered that the nurses were not following instructions on caring for Will's trach. They are supposed to change out the gauze around it every four hours and they're not doing it. His neck looked awful a few weeks ago. It was really irritated and there was lots of yucky drainage because they weren't watching it closely. It looks much better now, but if they don't take care of it properly, it will get bad all over again. What can I say, the frustration is never-ending.
Hays has done better today. He hasn't been nearly as irritable, so I guess his little system is getting used to the formula. He's still requiring some "assistance" to poop, so if that doesn't resolve itself by Friday I'm going to have to badger the pediatrician yet again.

WARNING: Discussion of poop to follow- not for the weak of stomach!!!!!!!!
So Hays has been having a tough time with the transition to formula. He hadn't pooped all day and his tummy was really hurting. He's been very fussy all day, lots of crying, squirming and farting. His pediatrician said it's just his body making the transition, and we just have to wait it out. But that got harder as the day wore on and he got fussier and fussier. Finally, this evening I called the NICU nurses at St. Mary's to get their advice. They told me to give him a glycerin suppository. Matt had to go to CVS and here's what he bought: glycerin suppositories, Astroglide, batteries, and breastmilk storage bags. Can you imagine what the clerk must have been thinking! Then I got to do the fun job of greasing up the suppository with astroglide and sticking it where the sun don't shine. Poor Hays, his eyes got huge! Luckily it worked, and within five minutes he blew out a diaper so bad I had to change his clothes. He has been far more comfortable and content since, so let's hope that puts an end to the formula trials and tribulations.
Will also had a poop issue today- namely that he turned blue while making a big one and had to be bagged. So that was fun and exciting. Other than that, he had a decent day. I'm going up tomorrow to work with the trach nurse. I have to do his trach change (yikes!) so think good thoughts for me.

Hays learned how to roll over! He did it the other day, but I thought it was just a fluke. But he's done it several time since, so i guess it's the real thing. He can roll from his tummy to his back. He hasn't quite figured out back to tummy, but he'll get there soon. We put him on a trial run of crazy-expensive formula today. He was really having an upset stomach and the doctor thinks he probably has an allergy to milk protein. We're trying this special hypo-allergenic formula for five days, and if he improves he'll have to stay on it. If it doesn't really seem to make a difference we'll put him back on breastmilk. This stuff costs $26 a can, but the other option is to cut all dairy products out of my diet. Since I live off of cheese, that ain't happening! Hopefully this stuff will do the trick and he won't be up at 4 am screaming with a stomach ache.
I talked to Will's doctor today because now they want to give him a gastric feeding tube. He's having problems with reflux and gas and it's causing him to be really agitated at night. The G-tube will help because they can vent the gas off his stomach easily. Plus, he can conyinue to work on bottle feeding. He'll need the tube until he's able to take all of his feeds from the bottle, but he has a ways to go. He's doing well with bottle feeding, but he can only take a tiny amount before he wears out. He won't be able to fully bottle feed by the time he comes home, so he'll have to have some kind of feeding tube. They don't like to send them home with an NG tube like he has now because you can have major problems if you don't get the tube in the right place. And it has to be changed every few days. The g-tube is really a safer option. But it's one more surgery (an easy one, though) and one more medical thing to take care of. Will we ever get a break? They're also going to put a probe in his esophagus to measure the severity of the reflux. If it's really bad, they'll have to do a surgical procedure called a stomach wrap. I have no idea what that involves. I figure I'll ask questions about that if and when we need to. Which we probably will, since nothing is ever easy with this child. It's a good thing he's so darn cute, because he sure is a lot of trouble!
On a happier note, thank God for vacation bible school. Mason started today and he was out of my hair from 9-12! Hays went down for a nap right after we dropped Mason off, and the house was so peaceful. I barely knew what to do with myself!

The Yellow River by IP Freely

Mason had a big day today. It started off with a trip to the Yellow River Game Ranch. It's a great place where you can see all sorts of animals, from deer, to bears, to bobcats, cougars and coyotes. The best part is that you can feed most of the animals and pet some, like the deer and rabbits. There are chickens, ducks, deer, goats and peacocks just wandering freely. We love petting the deer! They are so beautiful and sweet. And the squirrels out there are hilarious. If you hold a peanut out to them, they will take it right out of your hand with their little paws! It was so much fun, and it really lives up to its slogan "like a zoo, only more fun."

Then we went to see Will so Mason could meet him for the first time. It's long overdue, but it's the first opportunity we've had. Mason couldn't get in to the NICU at St. Mary's and it was RSV season while he was in Egleston's NICU, so he couldn't come in ther either. Mason thought he was so cute and gave him lots of kisses. He wanted to hold him, but Will just has too much gear to be held by a small child. Mason didn't have many questions about all of will's equipment. He did want to take his NG tube out, but we told him that would probabyly be a bad idea! When we left we asked him what he thought about Will, and he said he thought he was so cute and he wishes we could bring him home now.

It was a wonderful day, and I can't wait to have my whole little band of brothers together again.

I didn't post yesterday because I had girl's night out- Woohoo!!!! And I had enough girly martinis to make blogging difficult, hence, no post. But I did go see Will yesterday. He was looking good, no blue spells. Occupational therapy worked with him while I was there. He has good muscle tone, but since his movements are kind of limited by the trach, they are working with him to build strength. I bathed him and got him all cuted up in a brand new outfit, so he was looking quite spiffy. He's had a busy day before I got there because several of his NICU nurses had come to visit him. It's nice to know that they care about him so much that they want to visit him even when they're not taking care of him.
Today was Mason's birthday party. He had a ball even though it was about 900 degrees. We had the party at the park and I brought water balloons and water guns for the kids to play with. They burst all the water balloons in about five minutes and they chased each other all over with water guns. Everyone got wet, but I'm pretty sure that Matt and his Dad were the wettest of all. They played more than the kids! At one point, I had to take a water gun away from Matt so one of the kids could have one!
After the party, Matt's dad took Mason swimming and his mom watched Hays so we could go see Sex and the City. It was soooo good. Happy endings all the way around. Sigh, I miss that show!!!

Will didn't have a great day. My parents and sister went to see him and he had a blue spell and his heart rate climbed really high. It wasn't a terrible spell- he's certainly had worse- but it wasn't pleasant for anyone. They're are running some blood tests to see if he's anemic since that can sometimes make a baby's heart rate run high. He's doing fine tonight and they're planning to keep things quiet up there so he can rest.
Hays, on the other hand, had a great day. It's like somebody just flipped a switch on him and turned him into a perfect baby! He's been on a great schedule and he's been so smiley and cute. We'll see how long it lasts!
We had a fun surprise today. My best friend from high school, who is now a fabulous lighting designer in New York, was in town visiting his family, so he came to hang out with us this afternoon. It was great to have another grown-up to talk to, and Mason had lots of fun showing off!

Happy Birthday, Mason!!

Oh lord, my baby is four years old. I can't believe it. I swear it doesn't seem like four years could have possibly passed! Mason had a good day (except for having to do several turns in time-out for not listening!). We went to the library because I thought they were having an event for the summer reading program. However, I apparently can't read a calendar, because it's actually happening next month. Oops. Oh well, Mason had a good time because the world's sweetest children's librarian, Miss Jessie, gave him a bug collecting box since it was his birthday. Then we went to the grocery store to get cupcakes for after dinner, we went swimming this afternoon (Hays hung out with my mom in the shade), had his favorite dinner- pancakes- then had cupcakes. All in all a great day.
Hays finally decided to grace me with his killer smiles today. He's given me a couple in the past, but he mostly saves those for the striped cushions on the outdoor furniture. I don't know what it is about brown and aqua stripes, but he'll grin at those darn cushions all day long. But smile for mommy? Forget about it. Until today! I got four full-on happy smiles. Best sight in the world as far as I'm concerned.
Will has had a good day as well. He's gained some weight, and he's still doing well with the trach trials. He's going to have to switch to formula because I have run out of mom-juice for him. I hate it, but what can you do? His nurse thinks that switching to formula might help with his gas. I don't know if I've mentioned his horrible man-farts. They are truly unbearable. Seriously- the kid could peel paint. So if switching to formula will help, I'm all for it.

Will looked really good today. He was the sweetest thing i have ever seen today. When I came in, he was asleep. But I started talking to him and he woke up and smiled at me! He did it over and over, every time he looked at me. It was awesome! He has the cutest smile, and knowing that he knows me is the best feeling. Well, really he knows my voice from listening to the tape recorder all the time. But I couldn't care less how he knows me, as long as he does!
His doctor has decided to reduce his bottle feedings to once a day. He hasn't been gaining weight because he's expending too much energy somewhere. They're not sure where, so they're starting with the bottle feeds. He's taking a very small amount, but it still kind of wipes him out. Plus, he sometimes gets upset and we found put that some of the nurses are letting the feedings go on too long which uses more calories than he's getting. They'll do one feed for a couple of days, then start increasing them. We don't want to push him too hard and have him go backwards, so we're taking all his new challenges, bottle feeding, trach collar, etc, slowly.
Hays is doing well. He slept a five hour stretch after his crying jag last night, so that was kind of nice! Hopefully he'll let us sleep tonight. Tomorrow is Mason's birthday and I went to be well rested!

Whew, we are having a rough night with Hays. He's been really good the past couple of nights- no 3 am escapades- but tonight he just can't settle down. He was fine when Mason and I left to get stuff for his birthday party, but by the time I got back at 8:00, he was a shrieking mess. I'm pretty sure Matt broke him. It's 10:30 and he's just now settling down. The upside is that he may be so exhausted that he'll sleep well the rest of the night. That's what I'm hoping for anyway!
My mom went to see Will today and she said he was looking good. He's still doing well with the trach collar trials, so they may increase it to twice a day, then slowly increase the amount of time. The (short term)goal is to get him to the point that he only needs the ventilator at night. My mom spoke with the pulmonologist and she said that she's really pleased with Will's progress. She said his airway is looking better and she still thinks he'll outgrow this problem. The fact that he can now keep his airway open without CPAP support is a really good thing- he couldn't do that just a couple of weeks ago. I'm still trying to schedule a conference between ENT and pulmonology, but it may be a week or so before I can get everyone together.
One weird thing is that they're talking to a nutrionist about Will because they don't think he's gaining weight fast enough! I don't understand that at all. He's huge! He has quadrupled his birth weight and he's three pounds bigger than Hays. Hays' pediatrician is not concerned about his weight gain, so I can't see how there can possibly be concern about Will's. I guess they just want him to be a big ol' hoss.

You get a line, and I'll get a pole, honey

Today Mason got his first fishing rod. His fourth birthday is next week and this was what he chose as his birthday present from my grandparents. He was so excited he could barely wait for Matt to take him fishing after dinner. Matt took him to the lake in my parents' neighborhood. They didn't catch anything, but he had a big time anyway.

Will had a good day. They did a trach collar trial on him. That's when they try him off of the ventilator and without any CPAP support. The only thing he's hooked up to is the humidifier, so he's breathing on his own. He did great! He didn't drop his oxygen saturation at all and it was a complete success. Yay Will!!!! This is the first step to weaning him off of any kind of ventilator support, so we're thrilled that he did so well.

Hays had a pretty good day, too. He made his first trip to Target, and I consider that to be a very big deal! I think he liked Target, but who doesn't? He certainly got lots of attention! My mom was carrying him and she was stopped countless times by people asking, "how old is that tiny baby?" Imagine their surprise when she told them three months!