Tuesday, October 28, 2008

Brady and his Journey in Pictures

First family Photo
Brady and I with Dr. Travelstead First time holding him in the PICU at Blaire E. Batson
Him in his room at Batson with all his tubes..
The morning we took him to the dr. before we knew what was going on
Brady on his Birthday... right after birth
Brady the day before we got to go home!!! With all his cords off
Chris feeding Brady for the first time... In our room at Blaire E. Batson

It's been a wild couple of weeks...

Ok, I know it's been over 3 weeks since my last post but maybe after reading this you can try to understand why... On Monday, October 6, Chris and I went in to the hospital to get the labor process started so we could finally meet our son..after an induction on Tuesday morning we finally met him around 5:02 pm.. He was a beautiful 8lb 30z 20 1/2 inch (seemingly healthy)baby boy. We were surrounded by our families and friends and we couldn't have been happier. After a normal 1 1/2 to 2 day stay at Baptist we were given a clean "bill of health" and sent home to begin our new life as a family. Of course my mom came home with us to "let us get some sleep" but we knew she wanted to spoil her first born grandson and we let the excuses slide... We started to notice that Brady wasen't eating very well and it started to bother us that evening so we called the hospital nursery and tried to figure out what to do to get him to eat.. They said just be persistant with the breastfeeding but to try formula from a bottle if he still didn't eat.. so we did.. after our 3rd phone call to the hospital that night they told us to come so they could take a look at him.. so at 8:30 the next morning we took him to the clinic at Baptist Hospital for them to give him a once over and get him eating... He started acting weird (well, i now know it's weird.. at that time i thought it was normal) he was clinching his fist and screaming rythmicly, sweating from his forhead and neck, and was also being very lethargic.. once the nurse saw him, she was extremely consecrned.. she had the nurse practicioner from the nicu to come down and check him out, they got blood work and found out this blood sugar was a 12.. now for those of you who dont know.. a 12 is bad.. they explained to me that normal range for an infant is 60-110.. with a 12 he should have be comotosed.. they immediatly admited him to the NICU at Baptist where we were put into a waiting room to wait out some kind of news... Chris, my mom, and I sat waiting for dr's to asses him and get him some what stable while I was still just confused.. I had no idea the extent of his condition.. I was thinking we were gonna come in for a check up and go back home.. This was completely unexpected. Finally, the Dr., nurses, and Nurse Practioners came into the waiting room and asked us lots of questions about his behavior at home and then told us that while he was in the ICU, he had multiple seizures and had even turned blue at one point...we freaked out!!! I could not understand what was going on.. it was almost like a bad night mare.. I had just had this baby that I had been waiting 9 months to meet then after 3 days of barely knowing him, he was hooked up to all kinds of machines and pumped full of medicines.. I didnt even know him that well and it was like he was already being taken from me...Its the most horrible feeling. We got to go and see him in the ICU and he looked so helpless laying naked under a warmer hooked up to all kinds of cords and seizing the whole time we were talking to him.. It was truely petrifying.. The Dr.'s initally thought that the not eating caused the dehydration which caused the blood sugar to drop which caused the seizures.. but after getting his blood sugar stabilized he was still seizing.. Everyone seemed to be puzzled by this.. the next day after consulting the NICU dr's at Baptist, Chris and I decided to have Brady transfered to the PICU at Blaire E. Batson where the specialist were so they could all have a look at him. This was a hard decision for me to make because when I thought of the University, I thought "serious" and it honestly scared the hell out of me. We got him transfered to the University on Saturday, October 11th.. Chris' 28th birthday... Hell of a way to spend your birthday, I know! At Batson we saw several specialist... Neuroligist, which blamed all this on his brain; Hemotologist, which blamed it on his blood; Endocrineologist, which blamed it on his glands and hormones; and a Metobolic / Geneticisis which thought it could have been somthing to do with his genitics... after several test.. and I do mean several test, we found out that Brady has a blood clot in his brain.. this clot is in the venus system (veins) which drains blood from the brain not supplies it.. but it had totally occluded a vein draining blood away from his brain.. there were also some dark spots on the scan which was initally thought to be strokes ,or an area deprived of oxygen for a period of time... Well, naturally, we were extremely conscerned about our baby..not only with "can we fix this?" but now with "how will this affect him long term?" See, the thing with infants brains, as we were explained, is it is still forming and developing so if he HAD to have some kind of braing trauma it is best that he have it at his age.. me, personally, I would have rathered him not even have any kind of brain trauma, but what can you do?? So then treatment became an issue.. the dr.'s don't really like giving neonates any type of blood thinners, because they can cause more problems.. there is more risk of damage with bleeding in the brain and stuff, so even though that was an option.. it was gonna be a last resort kind of option... So they started him on a baby asprin and fluids.. yeah yeah, not to impressive, but they thought it could help and it did!.. after a repeat scan (MRI) after 8 days, there was some (very little, but some) improvement in the blood flow through that vein.. the "dark spots" were down graded from Strokes to Post Seizure Changes which was excellent news, and some of the dark areas were gone completely.. they compared this to a bruise healing.. all the dr.'s seem to be very encouraged by this news.. by this time he was only on one seizure medicine ...Phenobarbatol... and he had no seizure activity since we had been at the University..Genitics still had tons of test pending had him on Carnitine (some type of vitiman he was missing) and Endocrine docs had him on Cortizone to regulate his sugars... He was moved to a normal room and out of PICU- thank GOD!! We were thrilled but we really love all his nurses there including his favorite nures that was never "his" nurse.. his Aunt Katie, she works in the PICU.. so she made sure he was ok when Chris and I would go home and my parents were not there... Its so hard to stay up there 24 hours when he is in the ICU.. you cant sleep by his bed or anything.. it's just sitting in the waiting room with other families of sick kids.. its really heartbreaking!... but anyway, we were in a room!!!They were doing heel stick every 2 hours to check his sugars and still monitering him for seizure activity, which he had none! So after a couple of days up there they started winging him off of his meds.. they completely stopped his Phenobarb, and cut his cortizone down to twice a day instead of 3 times...Then they eventually cut his heel stick from every two hours to every six! Fabulous news again!! Its been a long ride trying to figure out which came first, the chicken or the egg, and i am not sure that we will ever know ( that probally would have helped us treat him quicker) but so it goes... I believe every Dr/ Specialist has their own chain of events of how everything occured but the final conclusion is... He had a clot (probally born with it)-The clot caused the seizures- The seizures caused damage to the adrenal glands,which made them stop producing cortizone- which made his sugar drop.. So we were sent home with cortizone to stabalize his sugar and thats it!! Praise God! Now we will be seeing every one of those dr regularly so the long ride is still not over but he is home and that is so great! We are finally getting to be a family at home and raise a baby like normal.. for the most part... WE really appriciate all the calls, cards, prayers, everything.. We couldnt have done any of this without the help and support of our families... my parents expecially for doing everything they did...Oh did i mention that the same time we were in the hospital with Brady, Chris' dad was in the hospital because his cancer had come back.. so his family has been through it double time this past couple of weeks.. its acutally a very freaky coinsadent of a story that I will have to blog about on another day.. but the important thing is that both our boys are home now and hopefully that is where they will stay for a long while! I do however, want to thank all of our Dr.'s personally though.. they have all really been wonderful to us... ~starting with my OBGYN Dr. Travelstead.. She has truely been amazing, first with the delievery, and then will checking on Brady while he has been going through this.. Thank you! ~my labor and Delievery Nurse Amy!! you were great and I know I couldn't have done it with out you, she was great when she found out Brady was back in the hospital too. Thank you for checking on him .. Thank You! ~ All the nurses on the Post partum floor at Baptist.. We seriously had the best nurses ever.. Chris and I can't say enough good things about each and every one.. Thank You All! ~Mrs. Terry Meadows, Director of women and childrens services at Baptist and Friend to me and my family.. you were truely a Godsend during alll the experiences we had at Baptist... Good and Scarey times.. Thank You! ~ the Neonatoligis at Baptist NICU, Dr. Temple and Dr. Robbins..They were both great with Brady and with us... Thank You! ~Brady's nurse Brandy at the NICU.. she was great! She cried with me and encouraged me while he was there.. we wish we could have taken her with us.. Thank You! ~The Neonatoligist at UMC ..Dr. Thomas, Dr. Boyte, and Dr. Hallstorm... Fabulous Dr.'s.. Thank You all for everything ~All his nurses in the PICU... Lindsey, Jennifer, Dustin, Heather, Christy, Gretchen, Lacey..... Thank you all!! (for all you do) ~for all the nurses who were not his nurses but still concerned and became our friends/family... Sarah, Jim, Elizabeth, (His Favorite) Aunt Katie.. and I'm sure I am forgetting someone.. but I hope not.. There were some we talked to and never got their names but Thank You ALL!! ~All his nurses on the floor at Blaire E. Batson... Amanda and Beth Ann I know I am forgetting some, but these two were his constant nurses.. Thank you soo much! ~ His Specialist: Neurologist- Dr. Parker, Dr. Vada, Dr. Evans; Endocrinologist- Dr. Moll; Metobalic/ Genetics Doc- Dr. Omar Abdul- Rahman and Dr. Boch; Hemotologist- Dr. Majumdar Now I am pretty sure that is it, but if I missed anyone...THANK YOU!! I will continue to update you on Brady and his status but thanks for being patient.. continue to keep us in your prayers.. Thanks again.. we are truely blessed Chris, Jenny, AND Brady!