Wednesday, September 1, 2010

Big Changes in the Right Direction!


Jake saw Dr. Heydarian today and had another great report. His heart sounded great and the chest x-ray looked good. A little haziness on the right lung but that is common for Jacob. He is still very pleased with Jacob's weight and overall progression.

Jacob now weighs 14lbs 11oz!

After the cardiologist appointment we went to have Jacob's echo done. I should find out the results of this tomorrow. Jacob does not like echo's, I mean HATES them. He screamed and screamed, I tried everything. Feeding him, holding him, singing, movies, binki dips with apple jelly (That usually always works)... nothing. After at least an hour he finally calmed down (Wore himself out). He fell asleep and I was laying on the bed next to him holding his hand. The lights were off and I fell asleep lol. How embarrasing. The echo tech woke me up when she was done. I could not believe I had fallen asleep. So Mommy got a cat nap and Jake remained still and the tech got all of the pictures she needed. Win for all! Praying it all looks ok.

On a different note... I still have not called the ENT doctor about Aidan's tonsils. I know I need to call for his sake. I know it is silly but I am so frightened by the thought of Aidan having to have his tonsils out. I don't know if I am strong enough to watch another one of my children go through surgery this year. It is too much. I know that sounds silly since we have gone through way more severe surgeries with Jacob but mentally its just so hard to take.


Jacob's medications are down to 6meds a day instead of 8! This is a great step in the right direction. He is no longer on Diuril or the sodium suppliments and only has to take his lasix twice a day instead of 3x a day. He will be on aspirin and captopril or enapril for the rest of his life. Hopefully we can ween him off of the rest at some point. Dr. Heydarian did increase his aldactone to twice a day since he is dropping the diuril and on of the doses of lasix.

Jake does not have to go back to the cardiologist for a whole month! That is huge after 4 months of going weekly and biweekly. Go Jake Go!

Look how much smaller this chart is!


Big changes in Jakes feeding schedule as well. I met with Jakes nutritionist and we talked about slowly transitioning him away from the continuous night feed. Most babies do not eat at night when they are Jake's age and it definitly is not normal for a baby to eat for 10hrs straight. It is important to me for him to have the most "Normal" life as he possibly can. So she helped me come up with a new schedule. Jake will now get 5 daytime feeds instead of 4. They will be 85ml each instead of the 80ml feeds he was getting. These feeds will be at 8am,11am,2pm, 5pm and 7:30pm. This will also give us one more feed to work on bottle feeding. His overnight feed will still be 40ml/hour however it will only be for 8 hours instead of 10hours. This plan will give Jake an extra 25mls over the course of the day. I am going to increase him by 5ml per feed each week as long as he tolerates it.

I have also changed him from the premie nipple to the stage 1 nipple and he seems to be taking to it really well so far. At first he did not want to use it after about 40ml but he is getting better. Jake guzzles his milk now. he drinks a whole bottle sometimes in less than 10 minutes and I don't have to use the tube. Can't tell you how happy that makes me. He is also not haveing the pain he once was because the tube site is not being used as much so it is not getting irritated.


Jacob has been doing so well. He has not needed oxygen during the day for about a week or maybe more. He was still needing it at night for a while but the last few nights he has not had to have it and he is holding strong with SATs in the 80's. He even reaches the high 80s at times.


I spoke with Dr. Heydarian about Jake coming to the heart walk. He did not think it was a good idea and I agree with him. There will be a lot of people there and there is sure to be some people who are sick. It is to big of a risk and not necessary. Jake is still small and needs to get stronger. My husband is going to stay home with him so that I can go and represent him at the walk. I am sorry to anyone who was hoping to get a glance but its just to soon. I can't risk that after all we have been through.

There is still time! If you would like to donate to Team Jacob you can do so by clicking on the banner at the top of the page. The walk is on September 18th in Charleston, WV. Come out and walk with us!


Did you know that every 13 minutes 1 baby will be born with a congenital heart defect? Did you know, everyday, that 11 of them will lose their battle? Did you know that the funding for CHD research is way underfunded and most of the money for research is from donations? How would you feel if you were told "There's something wrong with your baby's heart"?

No comments:

Post a Comment