Well here we are folks, 5 weeks and 2 days into this UVA stay with no clear end in sight. We have had a 6 day NICU stay followed by a transfer to the PICU post open heart surgery, then a 23 day PICU stay which resulted in a graduation and a transfer to the step-down IMU. Unfortunately, we were only in the step-down unit for a short 6 days and are back in the PICU fighting off two infections in Asher’s little body.
If you recall, the day after Asher’s open heart surgery he came down with a severe infection in his intestines called Necrotizing Enterocolitis (NEC) . Well, it decided to come back, but this time it brought a friend. In addition to the NEC Asher is also fighting off a bacterial infection in his bloodstream. This specific bug feeds off “unnatural“ blood flow from the heart and likes to attack the heart tissue.
Fortunately, Asher and his body started showing us days before a positive culture came back for an infection that there was something going on and he was put on a broad spectrum antibiotic in advance. As of yesterday the infectious disease team was able to figure out the best antibiotic to try and kill the bug, so we are hopeful in the next few days that things will start looking better for Asher. He has been such a trooper every single day of his life and he continues to blow me away.
Being born with a Congenital Heart Defect is already a life long challenge in and of itself for our little guy, but tack on an open heart surgery at 6 days old and 3 life threatening infections all within his first 37 days of life and that right there is exactly why they call these kids heart warriors. I will never fully comprehend why Asher was chosen to have this as part of his life story, but I can say with 100% certainty he is by far the strongest little person I have ever personally met and my life will forever be changed.
I will fight harder every single day for my children. I will fight harder every day to keep my mind and my body healthy for myself and for them. I vow to do the research and figure out how I can better help spread awareness and get involved in the CHD community. I have never had more admiration for anyone as I do for my 37 day old little boy and I am so lucky he’s mine!
I ask you to continue to keep Asher and our family in your prayers. Asher’s infections are serious and have the potential to keep him here for another 4-8 weeks. That‘s another month or two without his father, without ever meeting his brother and with Ryder not having his mother. It means figuring out additional resources to help us take care of Ryder while I continue to be away from home. This is an extremely difficult season of life for our family, but with continued support, prayers and love I know our tiny family of 4 will persevere.
Specific prayer requests:
that the antibiotics work to clear out the bacterial infection in his bloodstream before it has the chance to do any damage
that the antibiotics work to clear out the NEC and that there ends up being no concern for bowel perforations
that Asher’s extreme hunger subsides until it is safe for him to start receiving nutrition again (he has not eaten or received any IV nutrition since Monday evening)
that his body does not deteriorate much more in size too quickly. (one of the main ways to help get over these infections and be strong enough for them to not come back is by growth) Asher is currently only 5 ounces above his birth weight
Once his infections are gone and his gut is in a stable enough place where he can resume eating we ask you to pray for:
Asher to not have an oral aversion to eating or taking a bottle
that the weening from the remainder of his narcotics (which is currently not being weened) goes smoothly and that he does not have such a severe withdrawal as he was having
that he easily puts on weight once his feeds begin so we can take him home!
There are so many unknowns in this situation, but as time goes on and I have some more insight on how Asher is doing and what the immediate future is starting to look like I will try my best to keep you as update as I can. If you’re on Instagram, please follow @halfaheart_fulloflife I try to post a picture or two on there every few days or so of Asher. I don’t always have the energy or mental capacity to write out a blog post but still like to do little update from time to time. I also typically share those Instagram posts on mine and Garrett’s Facebook so if you’re not on Instagram keep an eye on Facebook every so often as well.
As always, thank you for your unending love and support. I wish I could individually thank every single one of you, but I just want you to know that even if we may not say it directly to you or even know who you are, we would not be able to get through this without you. I know Asher feels every single prayer and positive thought, so thank you from the bottom of my heart 💙
