tbt- 3.21.12 'downs and ups'

18 March 2014

Hayden's fight continues to be a roller coaster...
The echocardiogram from Saturday did not show a need to expand the hole in his heart. The doctors were content with just allowing him to take it easy on his new breathing tube for the next 24 hours and hopefully the problem would adjust itself. Sunday lent itself to a pretty low-key day just allowing Hayden to recover slowly. Later in the afternoon, Hayden's numbers and stats went low and he stopped breathing. At first we thought it was just a fluke, but it happened three more times in he next few hours. The doctors started trying to figure out what it could be and when they mentioned 'seizures', both of our hearts dropped. They explained that seizures are more common in babies with HLHS and other heart defects for a couple reasons, one being that they undergo bypass and that could always be a factor. They set up the EEG to get some reads. About a half hour after they set the machine up, he had another 'episode' and the neurologist was able to detect right away that it was in fact, seizures. They immediately started him on a medicine to control the seizures and as of now, he has been seizure free for over 48 hours. It is unknown how long he will have to remain on meds to control these seizures- it could be weeks, months, or years. We are just happy to find out the problem and have it controlled. 
Yesterday and today have been pretty calm days and the doctors have been weaning him off different meds, wires and other steps towards his recovery. His EEG monitors were taken off his head yesterday morning and they started feeds through a feeding tube! After lunch, his RA lines were removed (these are the lines that were connected to his heart, and also the lines that were preventing me from holding him). After 130 hours (5 1/2 days) I was reunited with Hayden in my arms. The emotions that spread through my body will never be describable in words so I won't even try. All I can say is that holding Hayden before surgery was so incredible- but holding him after he had overcome open-heart surgery, periods of not breathing, seizures, and so much more- it truly is a feeling I will never be able to relay properly. I am in such awe and amazement of him and what he has gone through- he truly is a fighter- and as of now, he is winning his fight. 
Today we are expecting more steps towards his recovery- hopefully his umbilical lines will be removed and his feeds will continue to increase. Once his feeds hit a certain level and his body is accepting them, we will be able to try bottle feeds! Hayden currently has a normal high- flow breathing cannula and we hope within a few days they will feel comfortable removing that as well. One day at a time! 
As always, we are grateful for your love and support- I am completely unsure how we would have gotten through all of this without you. 

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