Bella is doing so good! We get to go home tomorrow! We had some ultrasounds done yesterday and found out that her left kidney is completely backed. The "upper pole" (your kidneys have an upper and lower part to them to help them function as a whole) has stopped functioning. Lucky for us the tissue on the lower half seems to be completely healthy. The cyst that was removed in January has returned. She has been
afebral (no fevers) since yesterday and finally peed and drank a bottle for the first time since Sunday night!
So far the plan is for us to return in 10 days so Bella can have an MRI done of her kidneys. This will give the Doc's an idea of what the fluid is doing in her kidneys and also help them to see how they need to be reconstructed. She's going to be having surgery fairly soon here to remove the cyst (
Ureterocele in MD terms) and will then be having the reconstructive surgery shortly after her first birthday. Halloween! They are going to completely remove the upper part of the left kidney and then reconstruct it to make it strong enough to function and then make two ureter tubes instead of the four she has. They have to do this soon or else she will go into kidney failure and will need to be on constant dialysis.
It has been such a roller coaster being here. Bella is intrepid! She amazes me everyday how strong she is. She is perpetually happy and a fighter! She ripped her IV out last night so of course the
md's had to rush and put a new one. As if the first time was horrific enough! It doesn't take her long to bounce right back. I'm beginning to think I'm the weakest link in this family. I keep finding myself breaking down at random times. For instance changing laundry out of the washer or looking at the artwork by the kids here. It is exhausting putting on a brave face for everyone. I'm jealous of the moms
and dads who get to be here together. I was even angry! The first night we were here I was only able to sleep for 30 minutes and just the thought of having to face the next day with whatever it might bring and have to be strong for Bella made me just break down in sobs! At the same time if Joe or anyone would've offered to come stay so I could sleep I would've said "No" and stayed up with Bella no matter what.
It definitely puts a lot of things in perspective being here and pity parties don't last that long. We're actually on the Oncology (cancer) floor because it was the only available bed. Let me tell you...I would never want to be in any of those parents shoes. They brought in a baby no older than Bella that has an auto-immune disease similar to Leukemia. It was heart wrenching to see. My best friend Jill's baby had to be life-flighted to Primary Children's hospital in
SLC when he was only ten days old and found out he has
HLHS (
Hypoplastic Left
HEart Syndrome) and he's already undergone numerous surgeries.
I am so grateful, as much as this sucks, that our lot is going to be relatively painless compared to so many others. It also makes me so grateful for my knowledge and testimony of the gospel. I have no idea how people go through heart wrenching trials without the tool of prayer or the companionship of the Holy Ghost or the power of the Priesthood. These have been our constant strengths through all of this. I have become so grateful for the resurrection and learned so much about the atonement that I never knew before. It is truly wonderful to know that someday we won't need to worry about disease or won't have to curse our imperfect bodies for screwing up on us. I have learned that the atonement was meant for times such as this. When it's too heavy to bear the entire load there is someone there to take up the rest of it for you. There is someone there to comfort you and tell you it's okay to completely lose it in the elevator when someone asks you about the pink pig you just bought for your baby so she wouldn't be so scared every time she has to be stabbed with needles or strapped down to stretchers so she won't freak out when they inject her with
meds that burn so bad she can't even cry. I am beyond grateful for my Savior and I wish I comprehended that love more fully.
I am so grateful for Bella! I read the twilight series while we were here (I know...I know) okay really quick aside: I felt so retarded today. I didn't even give it a second thought that I was reading twilight, wearing my twilight sweatshirt and my daughter's name is Bella and our nurse was from Forks! Well one of the nurses thought it was all related and I felt ridiculous! Okay anyways...I was reading New Moon and Bella talks abouth ow Jacob is her "personal sun" I instantly thought that
my Bella was my personal sun. It doesn't take much to make her day. She is always so happy. I think I could learn a thing or two from her. She has become my life's greatest joy and blessing. If you would've asked me two years ago what I thought my life would be like, I never would've said "I would have a baby!" No No No. Babies were in the five year plan! I wouldn't change anything. Someone asked me if I would've still wanted a baby if I knew all the things we'd have to go through and I didn't even have to think about it. Of course! She is better than singing on any Opera stage or backpacking through the world's most remote jungle. She is my everything!
This was sooo precious
After she pulled out the IV in her foot. They put like 6 layers of corban on her arm!
Definitely not feeling good :(
Isn't she just the cutest!
Grandma Leslie always makes things better!
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