Sunday, June 22, 2014

An update...finally

So it has been over 6 months since my last post, for good reason, I promise!
I last posted the end of September. I had all these grand plans before baby came...I was going to do a what's in my hospital bag post (because I thought I had gotten it right this 2nd time around). I was going to do a my favorite things post for fall...but, as children are, baby Braden was VERY unpredictable.

Braden was born October 3rd, three weeks early, which wasnt too surprising since Sophia was born 4 weeks early in 2011. I thought I would have the perfect bonding experience with little man, at home, but shortly after arriving home, things were not what they should have been. See, Braden was VERY lethargic at home, barely opening his eyes, and only crying ONE time after we got home the first week of his life (during bath time...but I'd cry too!) He felt cold, I couldn't wake him, he wouldn't nurse. I took him to the pediatrician 3 times that first week home. The first check up was a normal first baby visit, I explained my concern that he wasnt eating enough (this wasnt my first rodeo) but he had gained weight, so it did not indicate a problem. Babies are sleepy, I was told, which is true and normal 99.9% of the time. I asked to come back in 2 days, and I did. By 7 days old He was sleeping 23.5 hours a day, and only drinking about 2 ounces a day. Still making wet diapers (I don't know how) and ge had gained an ounce. (How, i don't know!) But I still felt something was off. I was sent home. That Friday I called and made a sick visit because things were bad. He was still sleeping almost 24 hours a day, he only drank 1.5 ounces a day. I saw a different pediatrician, since my normal one was not available. They took him temperature.. 92.2 (something like that) I panicked, but the nurse went and got another thermometer, get his time it was somewhere between 92.2 and 93... I can't remember I just remember freaking out.
The doctor came in, and said he had gained an ounce, and that she didn't think their thermometers were very accurate, and he "felt" fine, so they sent me home.

Well flash forward 2 days later, Sunday night about 11:30pm, Braden was having trouble breathing, and breathing fast so we took him into the ER after calling our pediatrician our pediatrician a office, and that is where our nightmare started.

I won't go into ALL of the details of our 42 day stay in the hospital, but it included being told my son was in heart failure, being told he might not make it through the night, an emergency transfer to UVA hospital, my son being placed on a bypass machine to pump his heart because he was unable to do so, and being wait listed on the heart transplant list at status 1A.. The highest need. My life was in shambles, and I still see pieces of it, the worst days, like snapshots on a camera...but the feeling of being told your son may die, and his medical issue was unknown, stays with you forever....

I slept all 42 nights on a bench right beside my sons hospital bed. My husband and I were blessed with friends, family, and prayers all over the world and our prayers were answered. On the 42nd day, the week of thanksgiving, he came home with us.

Without writing a novel, the diagnosis was Myocarditis...a virus that attacked his heart muscle. This is very serious in newborns as there are not many known cases. We were told that most infants pass away in their sleep or it goes undiagnosed, or labeled SIDS. The rate of survival for a newborn was very, very small.

Although Braden has a long way to go, I am so blessed I have these days with him. Although his heart is not normal, and he may one day need a transplant if it gets weaker, I am so honored to be his mommy, and so blessed to have him in my life.

So there you have it. Occasionally I will make updates on the blog about Braden, but I don't want to dwell on the fact that he is not well, I want to rejoice in the fact that I have my family, and we can experience and enjoy every moment we are blessed with!
I hope to start blogging again soon, in between messy diapers, getting thrown up on, and a house full of crying babies, but you know what?....I love every moment......even the smelly ones......

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