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...
Wednesday, March 24, 2010
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!
Monday, March 22, 2010
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!
Thursday, March 18, 2010
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!!
Monday, March 15, 2010
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.
Wednesday, March 10, 2010
Today I was interviewed for the KAT103 phone-a-thon. The marketing department at children's asked me to tell Brody's story to help raise money for the hospital. I thankfully was able to complete the interview without crying. The fundraiser will be on the air April 22-24, and I hope our story helps bring in some money! Brody came very close to finishing his whole bottle today! He was only about 5CC short one time, and 20CC the time before that! He has gained weight, and is very close to his birth weight. They came today to test his hearing. However, he was moving around too much so they have to come back another time to finish it. I gave him a bath and just cuddled all day!Kind of boring....just as we like it!
Monday, March 8, 2010
Today the doctor increased Brody's oral feedings. He wants me to nurse him twice a day, and give him a bottle twice a day. This is another step towards getting to go home. Once he's able to take all his feedings orally, he should be ready to go home. He is just so tired at this point, that it is hard to keep him awake long enough to eat very much. On average he is only getting about 5-8 cc of his 53 cc feedings, orally. Kylie spent the whole day with me at the hospital keeping me company. If I didn't know better I would have thought she had been drinking, because she put an Iowa hat on him (he looks much better in husker red by the way). Other than that it's just a lot of waiting, and helping him gain his strength. Thankfully things are very boring in his room these days:)
Saturday, March 6, 2010
Friday, March 5, 2010
Yesterday was a long day of waiting for the neurologist. They weren't able to give me a time that she would be there, and she didn't come until 4:30. After the news that we heard the day before, it made the anticipation even worse. She looked Brody and the MRI over and checked all his reflexes. All this waiting and she couldn't give us any information we hadn't already heard. She said the MRI doesn't look good, but physically he did everything he should be doing. I asked her what that chances are that he will have problems when he gets older. She said it's a much higher chance that he will have a disability, than not having one. She said there's no way to know at this point what the damage is going to affect, so we will just have to wait and see. Do you know how hard that is for a parent to do? There's no test or any way to have a clue what the future holds for our son. Instead we have to wait until he begins reaching milestones, and see if he is behind other children. Basically the MRI results are right in the middle. They aren't horrible, but are far from good. That's why it is so hard to get any answers. She said that one of the first real tests is how he does with oral feedings. Today I began attempting to breastfeed him. He did very good for a premature baby. He was able to latch on a few times, but only for a short period. He got very tired quickly because it's hard for him to go through all the motions, and breathe at the same time. I am very confident that he will continue improving, and master it in a few short days. He has surprised so many people this far, we are hoping that he will prove the doctors wrong!
Wednesday, March 3, 2010
Today the doctor increased Brody's feedings and wants them given over only an hours time. This will get him ready to be able to have me nurse him. They again lowered his high flow machine (oxygen) and is only on 1 liter now, so the next step will be to take him completely off it. That was the only good news I received this morning, the rest was devastating. I knew it wasn't going to be good when the doctor pulled up a chair and sat next to me. He told me they got the MRI results back from yesterday. The results show that there is abnormalities present and he can't tell us for sure a prognosis. He is going to have a neurologist come talk to us tomorrow about what we can expect. He said there isn't one area that he can pin point an abnormality, but as a whole "it just doesn't look right". He went on to say that Brody has a high risk for Cerebral Palsy and/or mental retardation. He wasn't sure if the damage was done before he was born or after. When they did CPR on him, there's a possibility that he was deprived of oxygen flow to the brain for some time. Our family is trying to remain positive that this will only be a false prediction. We all knew in the back of our minds that this was a possibility, but now that the tests prove somethings not right...it really hits home. No matter what happens one things for sure...he will be loved unconditionally. We are so happy that he has made it this far, and could never imagine not having him. Although it makes the road a lot more difficult we will get through it, we always do!
Monday, March 1, 2010
Brody's chest xray was repeated this morning with no improvement. The doctor decreased his feeding and the amount of fluids he is getting, in hopes that it will decrease the amount of fluid in his lungs. They did another ecchocardiogram this morning and the function of his heart looks good, but his PDA is still not closed. To attempt to get this duct to closed, they have already placed him on ibuprofen twice. The cardiologist said that he wants to try this treatment one more time, and if it doesn't work again they will have to do surgery. This would would be the 5th surgery he has went through. The nurse is beginning to wean him off the incubator, and will be in a crib hopefully by late this evening. This means we can bring him clothes to wear!! He is still fussy at times but I am pretty sure it is because he isn't getting much food yet, and is hungry.