4/7/10

Yesterday was Brody's due date and seven weeks ago today he was brought into this world.Since my last post, not a whole lot has changed. It turns out he does have MSPI, so is now on a special formula.He is on one that is a step down from what Bryson was on, and much cheaper. We are hoping it continues to work so he can stay on it! The day he was released from the hospital his liver profile came back alittle high. This was strange because all along this had been normal.So they did bloodwork last friday to see if it was getting better, which it was.I took him again today to get this drawn and will find out the results tomorrow at the appointment with his pediatrician. Brody might possibly be making his first trip to Bedford this weekend, that is if we get the okay from his doctor.Doug and I are kind of worried that if something were to happen, theres no hospital really close.I will continue to keep everyone updated as I can. Been alittle busy around here, otherwise I would post more often!

Dream come true

The day finally came that we could take Brody home with us. We are still trying to figure out his sleeping patterns, and understand all his cries. He sleeps a lot during the day, but is awake the majority of the time at night. I am starting to see similar symptoms that Bryson had with his milk soy protein intolerance, but it is only at night so I am just giving it time. I keep thinking I am just being paranoid, and don't want to jump to switching to special formula too soon. Especially because that formula costs 45 dollars every three days (which is about 7200.00 per year). It is so nice to have him home with us, and Bryson LOVES his little brother. Everytime that Brody fusses he walks up and tries to comfort him. He wants to hold him all the time!Brody will go to meet our pediatrician tomorrow, and has lab draw on friday for follow up. I will continue to keep everyone updated with lab results, doctors visits, and milestones that are accomplished!

Please Check Out How Much Bryson LOVES His Little Brother...
http://www.youtube.com/watch?v=eEZBquBhDwE

3/24/10 continued

I forgot to mention that Brody decided to pull his feeding tube out yesterday...so they decided to leave it out. Already being naughty!!!

03/24/10

Brody's procedure went great yesterday (minus the four hour delay waiting for surgeon). He scraped away all the infection on the canula site, so hopefully it is now taken care of and will heal. He's eating as good as a normal newborn should be doing. They also need to do the car seat test before he can leave. This is where they put him in it for an hour, and make sure he stays stable for the whole time.Finally we will go through all the discharge instructions, and we should be on our way by friday or saturday!!! Fr. Tom came to visit and to check on Brody today.He held him for the first time, and couldn't believe how different he looked from his baptismal.It just hit me that this is really going to happen, we really get to bring him home where he belongs. It's hard to stop perfecting the nursery...I keep changing everything. I hope everythings perfect for him, he deserves it!

3/22/10

Brody has continued to prove to everyone that he is determined to go home. He is now up to 6 oral feedings per day, and has completed all of them thus far. If he succeeds, he will begin "ad lib" tomorrow. This is where they continue with the scheduled feedings but is allowed to eat as much as he wants. This is a good thing because there were a few feedings today that he still acted hungry after he ate the whole amount. We will begin the process of discharge as planned for the end of the week. This includes circumcision one day this week, and car seat placement. Over the weekend his canula site on his neck broke open, and was oozing with a yellow-colored drainage. Today they had the surgeon come look at it, and see what he wants to do. He decided the best route was to drain it tomorrow because it was infected. Therefore, he can't have anything to eat after 4 am because they are giving him anesthesia, and are opening up the site. The doctor sounded confident that this would not affect him going home as planned. Today I realized how close we were to losing our son. The surgeon that normally wouldn't look us in the eyes, did today. Looking back at all Brody has been through, it's very hard for us to understand WHY? I remember seeing the fear in the doctors eyes as we told them we had complete trust in all there decisions. To do what needed to be done to save his life. They did just that, and we still have this miracle with us today. Our faith was tested throughout this time, and has grown stronger than ever before. Those of you that continue to follow this blog...thank you. It started out as a way for me to vent the reality, and ended up being important to people we love and some we've never met. Brody's case is truly one in a million, as the doctors have said many times before. I often wonder why something so abnormal had to happen to us, but end up with the same conclusion. It's because we have the support system, faith , and love to get through anything...and this just proves it. Thanks again for all the support, it will never be forgotten!

3/18/10

So the doctor had recently told me that Brody would most likely be going home this coming Monday with the feeding tube. However, he came in yesterday to talk to me and had changed his mind. He didn't realize Brody was still premature because of how big he was. He said he just figured he was past our due date. He says that there is no need to rush Brody to go home at this point, that he can stay there and keep getting stronger for a few more weeks. So we are continuing to work on his oral feedings. He is doing a little better than before, he averages 1-2 whole bottles per day. He is gaining weight like crazy, which is good. He's now up to 6 pounds 8 ounces, and his face is really filling in. No talk so far about a repeat MRI to check mental status. He did pass his hearing test so that's a definite plus!!

3/15/10

Today the doctor came in to see Brody, and says he looks very good. His feedings are about the same, and I asked him if I should be concerned that he isn't eating more. He said Brody is completely normal for someone who has been through what he has in his short life, and ECMO babies usually are bad eaters. He said that he is going to continue monitoring his eating this week, and re-evaluate on friday. If at that point he thinks he hasn't improved at all and it is going to take another month or more, they will begin training us to tube feed and send him home. However, if he thinks it might just be another week until he can get the tube out, he will keep him until then. We are kind of nervous to take home such a delicate baby, but at the same time excited to be at home as a family! They took his sutures out of his neck and femor the other day. Also cardiology released him from their care the actual words the cardiologist wrote in his file: "patient completely stable, and too good to continue following with cares".....awesome words to hear:) My next worry is that he may develop the same intolerance that Bryson had, which is milk soy protein intolerance. Hopefully being a couple weeks into the feedings without symptoms means we're in the clear but we will just have to wait and see.