Small update!

Max has moved to his own private room in the RCNIC. We now have cable television and our own bathroom. They wanted us to stay overnight to be sure that we could troubleshoot and connect and disconnect Max from the cycler. We did this on Sunday night. It went great... no alarms or anything exciting. I only got about 2 hours of sleep, but Max slept like a rock and got about 12. He seems to like the peace and quiet.

Max also got his 4 month immunizations last night. Boy he was not a happy camper. I told Tim that he has to go to the next round, because it is heartbreaking. They also started to give him his epogen medicine via injection last night as well since we will have to do this at home.

Oh, I almost forgot! We were told on Sunday that there is nothing else that the doctor's have to do for Max that we can't do at home. So guess what everyone......MAX IS COMING HOME!!! Of course a hurricane has to come and put daddy to work at least 16 hours a day so we are going to wait probably until Friday so that Tim can be with us. We don't want to take that experience away from him since he has been waiting for this day as well.

Also, one of Max's renal levels is elevated so the nephrologists are playing around with some of his dialysis settings to see if they can get it lowered. This may mean that he comes home on a 20 hour cycle instead of a 16, but we will deal with that. They will slowly get him to where he has more time off of the machine. They are saying that he should still be able to head home by the end of this week as long as Tim and I are both comfortable with doing so.

Since this was sprung on us very quickly (we were told at least 2 weeks once he started on the cycler) we have a house to clean and sterilze and, I am thrilled to say, diapers to buy!!! I can't wait to go out and get the things that one needs for a baby at home. So if you can't tell, we are a little bit excited! Actually, to be honest, I am walking around on cloud nine and break down in tears every now and then. I cried last night before I went to bed thinking about how we have to say goodbye to our wonderful nurses and friends by the end of the week. One of Max's favorite night nurses had him last night and I about cried when she had to give him his shots considering it would be the last night she got to take care of him. She is back on Friday night, so I am pushing to not leave until she gets there so we can say goodbye. Okay, I'm crying again! (Tonya- we love you!)

Okay... we'll keep every posted on when the big day will be!!!!! We can't wait to show him off to everyone!

My Cousin's Twins

I took Noah and Nicholas's pictures last night. Here are a few of them!

Nicholas and Noah
Nicholas
Noah

Big News!!!

Max is on the cycler!!! Wednesday was the big day! They started him at a 24 hour cycle and he handled it great, but they were getting a negative output from him. No one really knows why he was putting out a lot more than they put in on the manual setup and not enough out on the machine. They say that this is a common problem with infants on the machine because it isn't made for babies. So the nurses and I have decided to invent a dialysis machine for babies :o) I just wonder why that hasn't been done yet.

So yesterday, they took him down to a 20 hour cycle and increased to a 2.5% glucose solution- this pulls more fluid off of the body. So I called this morning and he has a positive output of 40+mL. This means that they have pulled 40+mL more off of Max than what they put in him. Not that being negative is bad, but we would rather be on the positive side of the board.

The nephrology fellow does not want to rush anything because of how easily Max "springs a leak." They did a chest x-ray this morning and there is absolutely no fluid around his lungs- WOOHOO! My guess is that they will increase the amount of fluid that they put in from 120mL to 130mL today. Like I said, they are going to move slowly with all of this. Max's maximum (haha funny) volume for his weight is 200mL. We do not have to get to this before they would send him home.

Let's see... Tim and I celebrated our 2 year wedding anniversary on Tuesday! We didn't do much, but I am VERY proud to say that I made, for the very first time, BBQ ribs in the pressure cooker! They were FABULOUS! I even did corn on the cob! For those that don't know me all that well- I do not cook often :o)

Anyway, have a great weekend and enjoy the much needed rain!

Max at 4 months!

Well, as you can see in the video, Max took a bottle twice yesterday! Two 20mL bottles! This is a record for him. You have to offer it only on Max's terms though or else he wants nothing to do with it. When he starts shoving his hands into his mouth, offer a bottle :o)

Early in the week, they started to consolidate his feeds. We are very happy to say that Max is down to getting his feeds over a half an hour over the pump through his g-tube. The next step is a bolus feed. This is when they put the milk in a big syringe and let gravity take it to his belly- this happens in a much faster rate than the pump. Ideally, this is where they want him before he goes home.

Let's see. As of last night, Max was over 12 pounds. Take into consideration that he was full of his dialysis fluid his nurse, Tonya, weighed him. So we have to subtract some of that.

As far as the dialysis, he is doing pretty good with it. They started him out on Wednesday at 60mL of fluid and he is up to 100mL. They would like for him to be at a minimum of 120mL in order to go onto the cycler. His total goal is 200mL. If he continues to do well it looks like he may be on it sometime next week. They took a chest x-ray this morning to confirm that the fluid was staying where it's suppose to. The x-ray showed a little bit of fluid on the right side, but the nephrology fellow, Ben, said that this is totally normal for kids on PD. So no one is too worried about it. They will do a repeat x-ray in the morning to make sure it's not increasing. If they're not worried, then we're not worried.

Update on twins: Nicholas and Noah are doing well. They are still in the hospital just to work on their feeding skills and to make sure they are gaining weight. They should be home by early next week sometime. Thank you to all that prayed for them. I know that they appreciated it very much.

Big Day Today!!!

Max had a exciting day today! He got to leave his pod today for the first time (that didn't end in surgery)!!! The RCNIC has a play room for the older babies so that they can get out of their beds and get a look at a different environment. So when I showed up this afternoon they informed me that they were going to be doing this. I was so excited!!! We put him in a stroller and strolled him down the hall and back into the play room. So he also had his first stroller ride as well!

There was a large mirror on the wall at his level- he loved this! He was kind of interested in the toys, but more so with the Child Life woman talking to him. He was hamming it up with her. Very stinking cute!

Also, the nephrology fellow came to talk to me while we were playing and he said that surgery has cleared Max for dialysis. So that will be started tomorrow morning. The fellow also mentioned that his goal for this month is to get his "favorite" patient home!!!! We're keeping our fingers crossed!

Here are some new pictures from over the past few weeks! Enjoy!



All tuckered out
Joe Cool

First stroller ride
Playing in the play room

Max's Professional Pictures

Here are a few of the pictures that Max had taken for his public debut. The story isn't posted yet, but it should be by the middle of September. I will post the website as soon as I get it. Enjoy!

Also, Max is doing "wonderful!" They are watching his kidney levels very closely (needle pricks every morning). As of right now, they are still wanting to hold off on dialysis for another week. As long as everything stays stable and he continues to gain weight this shouldn't be a problem. They are doing this to be sure that everything with the g-tube nissen is healed. Other than that he is as cute as ever! Smiling and flirting like usual. It was so funny, last night his nurse, Tonya, was talking to him and he would get this huge grin, shrug his shoulders and turn his head away from her like he was blushing. It was so cute. He is such a flirt :o)

Also, my cousin's twins were born yesterday. The ultrasound was wrong and both boys were in the 4 pound range. Sorry, I don't remember exact weights (something like 4 pounds 3 ounces and 4 pounds 15 ounces). As far as I know, they are both doing pretty well. I will get more details once things start to settle down for them. Thank you for the prayers!

Now, Enjoy the pictures!

You all have provided us with so many prayers over the past 7 months and I am now asking that you do so for my cousin Chrissy and her husband Eddie. They will be delivering their twin boys, 5 weeks early, tomorrow at 12:15pm. They did an amniocentesis on Monday to check for lung development and the bigger of the two boy's lungs are not where they should be. They have to take them though, because the smaller baby isn't growing like he should be. Please pray that all goes well with the delivery and that Noah and Nicholas do very well once they arrive.

It is greatly appreciated!