Searching for info

I believe most everyone knows what has been going on with Nate the past few days but just in case.....Thursday afternoon he had a lot of blood in his diaper. This continued into Friday. I finally convinced the doctor to send us for an ultrasound of his kidneys to see if this was from the kidney stones. We had the u/s on Friday but the results really didn't tell us anything new. He has a lot of small stones and still has the large ones on his right kidney. One troublesome piece of info...it appears the stones may be growing. We have been told before he had a 2mm and 4mm stone. Now it appears he has two 4mm stones. If these things are growing I would think they would be trying to figure out a way to get them off the kidney all together. I don't understand the lack of information from these doctors. They treat this as so routine when this situation hardly ever happens to such a small infant. I have contacted a few hospitals in different states ( via email) and I hope to hear something tomorrow. The Urologist at Childrens moved our appointment up to next month so I want as much info on this as possible before we see him. Let me know if anyone has any ideas! There is an answer I just have to find it!!

Nate decided he didn't want feeding tube!!!!!

Nathan decided he didn't need his feeding tube yesterday!!! This is really crazy and I hope I can explain it to ya'll correctly! He was in his bouncy seat, I was sitting right next to him. The next thing I knew he had his button in his hand playing with it!! It took me a minute to realize what he had done. He pulled his feeding tube completely out of his stomach!!! He never cried or made a sound! I called the doctor and rushed him to the ER. The nurses tried 3 times to put it back in, then went and got the doctor. She came in and was determined to push it in while my poor child screamed in pain and terror! Finally, they left the room to "give him a break" and when they did I called every doctor I could think of to try find out what to do! Dr. Brumund responded and said it came out a little earlier than they had wanted but that if we were okay with leaving it out then he was fine with that. Trust Me....we are FINE with leaving it out!!! He hasn't received any feedings through it in two weeks. There really is no reason to have it in. If they decide in the future that he needs it put back in they will surgically put it back, which would be a lot better then these doctors just trying to force it in! It was the craziest thing I have ever seen. By the time we got in the ER the hole had already began to close. There was NO WAY that thing was going back in without surgery or A LOT of pain!! Since we got home he has been fine. He surely doesn't miss it and I don't either! As we are all learning, Nathan makes the decisions on when it is time to do things!!! We have to watch him for a few days just to be sure the stomach lining closes like it is supposed to. They say less than 20% of these will require surgery to close completely, and we all know how nathan likes to be unique!!! Please say a little prayer that everything will close correctly by itself and we won't have any more drama with this!!! On another note I got some new info on doctors for his kidney stones and am waiting on some return calls today. Hopefully we can get some sort of plan with those soon. Even though it was a little traumatic in the ER we now have one less thing to worry about now!!! Yahoo! Go Nathan!!!!

HAIRCUT!!!!

Hi guys! I'm posting some pics of the boys. Check out Nathan's haircut!!! It is still a work in progress....I can't keep him still!!! I need to even out the sides but I am too afraid of cutting his ear. Yes, I cried when I cut it! It was so very sad! I told Sal we aren't cutting it again until he is two!!! He really is doing great. He eats ALL THE TIME!!!! Last week we stopped feeding him by the pump overnight and believe it or not, he still sleeps almost all night. He usually wakes up between 4:30 and 6:00 for a bottle and that's it! I have to get Austin up at 6:00 anyway so it works out well. As of yesterday, Nate is holding his bottle now! He seems to be a lot more active too. He rolls over a lot more and scoots all over the room! It won't be long until we won't be able to catch him!! Austin seems to be enjoying school, for now. He loves his teachers and is doing wonderful with the work. Third grade homework seems so much harder to me but he is sailing right through it so far. I think he may like the challenge!! I'm sure getting up in the mornings will get old to him soon but as for right now hings are good! Enjoy the pics of my handsome boys!!!

Our Boys!!!

Back to school!!!

Austin started school last Wednesday and so far so good! He seems to like his teacher and has been happy to get up and go, I'm sure that will change soon! He is already telling me today that he doesn't have to go tomorrow! Anyway, things are somewhat back to normal now.

I am happy to say that Nathan is doing WONDERFUL!!!! He is eating 4 1/2 to 5 ounces every three hours. He looks to be gaining weight. We went to his cardio last Monday and he weighed 9pounds 11ounces. Dr. Brumund is lowering his meds and we will see him next month and he says he will try to have Nate off all meds!! I never thought I'd see that this soon! He is only on the diuretic and Zantac once a day now! It is like he is a totally different child since we've been home. He smiles all the time and even giggles and laughs out loud! He is rolling over a lot more and scoots on his back to get to where he wants to go. This pic is the only time so far that he has held his own bottle for the entire feed but he will try now and then to hold on to it. It is amazing how fast he recovered and how good he seems to feel now. We are so very thankful!! Miracles do happen and God is AWESOME! Again we are so very thankful for all of you. Thank you for all the prayers and support you have given us. Nate still has a few battles ahead( stones and such) but for the first time since he has been born I really feel peace in my heart that he is going to be okay. That is a good feeling!!!

Cardiologist Appointment

Nathan had his follow up with Dr. Brumund Monday and the inflammation is gone! The steroid he was taking cleared up the problem! The heart monitor did show he has a small block but there isn't anything they will do as of now. Dr. Brumund will just monitor it for the next month and he says it should "work itself out", lets hope so. Being that Nathan's heart has never had the capability to function correctly it will take some time to work out these kinks. They weighed him last Thursday and by there scale he weighed 9lbs 7oz, which is excatly what he weighed before surgery( on their scale). His weight Monday was 9lbs 8 1/2 oz!!! He gained a pound and a half in 5 days! We will take whatever we get! He has been eating a lot more. His appetite has definitely increased. I will post more after our appt next Monday.