A Medley of News

Thank you all for your messages, emails, and comments! I really appreciated every single one of them. Yesterday was scary. But thankfully, I had my sister with me. We walked into the cancer center and said “I think we’re too young to be here.” We were surrounded by women in their 50’s and 60’s. They all had the look of “no big deal, I’ve done this before.” We looked like birds in a cage. Jittery, nervous, we laughed to ease the tension. Most women were in and out; one woman was called out with obviously bad news. It reminded me of all the time I spent at the cancer center with mom. It reminded me that we really have no idea what could happen next in our lives.

It wasn’t as bad as I thought it might be. It didn’t hurt. Although, it was rather odd having a complete stranger handle my boobs like sacks of flour (sorry, that was probably TMI…). I got the results immediately: no cancer. They said “See ya when you’re 40!” I said, “Sounds good.”

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The swelling in Jax’s fingers is going down and the bruises are healing already. He’s going to be fine. I talked to the hospital Risk Department and they asked “What can we do to make this better for you?” Aside from the obvious: train your staff, I told them I did’t know yet. Probably nothing. Jax is ok. But seriously – WTF – how is this person working in a children’s hospital if she has no concept of gentleness? They are going to call me next week to let me know what steps they took to prevent this from happening again. I’m curious to hear what they have to say…

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The courier just dropped off Jax’s Synagis dose for tomorrow (dose 3 out of 5). I’m so thankful this drug is available to us! While it is not a vaccine against RSV, it can help make the disease less severe if Jax does catch it. Since Jax is bigger now, the bill is bigger, too. This dose cost $2800. Thank God for good insurance!

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Jax had an eye appointment today. I went in thinking we would get the usual “hooray – Jax’s eyes look great!” Unfortunately, that did not happen today. It is now very likely that Jax will need laser surgery to combat the ROP. The Doc is concerned that the blood vessels are still not as mature as they should be. She also found blood in his right eye, which means the bad vessels may be rupturing. The surgery requires general anesthesia and will take approximately 30 minutes. *SIGH* Another surgery.

Rather than risk general anesthesia twice in one month, we are going to try to combine the hernia surgery and the eye surgery. This would be ideal because then he only has to go to the hospital once and be put under once. We should know later today or tomorrow if they will be able to combine the surgeries.

I’ll admit, I’m deflated by this news. Even though we always knew this was a possibility, I had let myself believe that the Avastin injections would be enough. I suppose in the grand scheme of things, this is not that big a deal (you know, like compared to heart surgery). But, I’m still worried about his vision – the surgery does pose a risk of blindness or partial vision loss. I’m worried the most about him going under anesthesia. One silver lining is that he has had a chance to grow and get stronger over the last couple of months, so hopefully he will be able to bounce right back after the surgeries.

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We’re really looking forward to the weekend. Steve’s brother and his family are coming into town from South Dakota. Jax is sooo excited to meet his cousins, Mia, Sam, and Will, for the first time! Will is two months younger than Jax. I already know these two are going to have a blast together (and probably cause some trouble) when they get older! It will be fun to spend time with the family, celebrate all the good things in our lives, and relax.

We’ll think about the surgeries later…

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

9 thoughts on “A Medley of News”

  1. Oh Andrea, what a roller coaster of emotions. Certainly they are all strength builders. You come from a family of strength and you are part of that wonderful family that I happen to think the world of. Never, ever give up. You all remain in our thoughts and prayers, especially in this Christmas Season. God bless each of you…………….

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    1. A roller coaster, that’s for sure! But, as one of the other preemie moms I know says: “roller coasters are supposed to be fun!” Thanks for the encouragement! Merry Christmas!

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  2. Steven & Andrea – I am staring at his cute little face, especially the one in the lower left corner (of the above photos). They are all precious! We are celebrating your good news and remembering that Jaxson has the best angels looking over him. Love ,Jean

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  3. We are so relieved to hear your sack of flours are a.o.k…..and Jax is doing what he needs to do. GROW GROW GROW. Our thoughts and prayers are with you guys aways. I showed Tori and Josh the pictures of Jax and they both couldn’t believe how big he is. Merry Christmas

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  4. Wonderful news for you!! I can’t completely understand the feelings walking into the cancer center, but I can understand the fear of the unknown. My sister and I would have been giggling too 🙂 When my youngest was 6 weeks old she got very sick and had to have surgery. I was scared. Its a fear that only mothers will have. I had to do it on my own, everyone had to work. I sat and cried for the whole hour until they came to get me. Thankfully at Childrens anyone we have dealt with always was caring and compassionate. Even the nurse that Anni threw up on still snuggled with her so I could try to sleep(not the most comfortable place but I’ve had way worse) and in my opinion went above and beyond by washing her blanket instead of just throwing it in a bag. Parenting is a wonderful and amazing expierience, sometimes it just throws in something unexpected to keep you on your toes and remind you its not all sunshine and lollipops. It seems that you have a amazing support system and a great team of medical personal(with the exception of the idiot) in your corner. Jax has and continues to surprise everyone, we will hope and pray for the best because sometimes its all you can do 🙂

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