The last month I've been trying to decide what to do with this whole blog I have. Lately its is getting ALOT more attention then I ever planned on. If you don't know already, Shaun and I are from the west (Idaho & Utah) we moved to Georgia right after we were married so, I started this blog to give little updates to family and friends back home. I'm really not a fan of chatting on the phone so this gave me a way to avoid that as well as have something fun to look back on and read. Then Brighton entered our world and people came together to support us. And a lot of that was through this blog, and oddly enough its even starting to get shared around the web.
Here's my dilemma. Do I go back to this being a place where I give the monthly update and no more? Or do I keep writing and sharing the random thoughts like I have been the last couple months? Do I want Brighton's story to become more public? I dont want her or anyone else to focus on her heart defect. But people enjoy reading those things and i've even had a few emails from people I've never met saying how much it touched them or helped them get though a rough day, which is so humbling. I'm not sure what I'll do. I have come to love writing, so there is that. It's kind of a minor decision to everyone but, to me its kind of big.
Anyways.....BRIGHTON!!!!
I posted on IG a few weeks ago that she has had a few updates. I'll go into a little more detail here.
The last few months Brighton had a lot of "pop up fevers" as I call them. She will get a low grade fever that will last 12 hours or so then it will go away. It had me quite stressed out. With her endocarditis history, fevers are a something we worry a little more about than normal. Well one day she had a fever and it didn't go away. We decided to take her in to the hospital and they did their usual tests. Everything came back negative so we headed home. The next day we got a call that she had a UTI and because of her history she needed to be admitted to the hospital for 72 hours while they run the antibiotics. I had a minor panic attack (that place is rough) and called her pediatrician right away. Have I said how much we love that guy? He's amazing. He told me not to go yet, he was going to call and see if he could get them to allow her to be treated as an outpatient. Her heart was totally fine, so he felt it would be just as safe. Thankfully it worked and we were able get the 3 antibiotic shots in his office.Her having an UTI is super normal and really common. Baby girls get them all the time. But..... that heart. With CHD there is usually an another abnormality somewhere else in the body. Because of this the doc ordered a full work up of tests. They tested her kidneys, did and ultrasound, and then did an x-ray. During the x-ray they found that she has reflux. Again, SUPER common. They decided to put her on an antibiotic that she will take everyday for the next year or so until she outgrows the reflux. Babies usually out grow it by about 1. Because she has the history with infection they want to look into a couple other options but so far she hasn't had any more fevers so I think they will opt to do the antibiotics rather than the little procedure. She has more testing in January to decide what the game plan is.
Her heart... We switched cardiologists to a doctor I got to know while she was in the hospital, and I REALLY like him. He was super excited to see her again since he took care of her during the infection days. He was amazed about her weight gain. I guess that for a baby that went through that intense of an infection she shouldn't have been able to gain all the weight back so fast. He obviously isn't up with her every 3 hours feeding her a bottle. I wasn't surprised at all. He also said that he is taking the "heart failure" diagnosis off her chart. SO EXCITING! There is one really scary, hard to swallow fact. Brighton will be having another surgery here in the future. Its not a 100% thing, but it is 99%. We're really hoping for that 1%, hoping like crazy. This one is a little scary because it has such a wide range of what it could entail. With the first surgery they had a specific game plan from first look. With this, all they can say is "we dont know yet". She has a narrowing of the pulmonary artery which increases her blood pressures. The hope was that she would out grow that as her heart grew and that area stretched out. Sadly, it hasn't changed at all. I honestly have no idea what this surgery looks like. It could be super simple procedure where we are in and out with in 24 hours. Or it could be really complex, causing her to have to have multiple surgeries of the next decade. Again, we will know more the next few months as they watch her closely.
Out side of all that this girl is the best. She is a very easy baby!
- 6.5 months old!
- 2 teeth popped though this week
- She can sit unassisted
- Rolls all over the house
- Loves to feed herself, wont eat any thing on a spoon from me...but will for others. Weird.
- Sucks at sleeping at night, but its the only time she actually will let me hold her while she sleeps so I'm ok with it.
- Loves to play with Carter
- Must sleep with her blanket.
- Explosive pooper
- Lost all her hair :(
- Mommy's girl and I love it.
- Our perfect little one!
