Lucky Lady

This last week or so has been filled with some great moments. For me as a mom, wife, and friend. So here's the list of everything that God has blessed me with (especially over) the last week! -Levi has had the best blood work results yet. -Mary, John, and I got the office completely painted. It looks awesome. -I was able to get all of the furniture moved back into the office -M got furniture for her new house -I woke up on Saturday morning to the sound of Levi laughing in bed next to me -We've seen Adam and Kelsey 4 times in two weeks! -House blessing at Adam and Kelsey's was WONDERFUL! -Tonight, dinner with some amazing friends -Levi lights up when John, he and I are all together -We got a piano! -Levi is stinking adorable -I got to help a friend celebrate her upcoming wedding with a shower -People at work keep blessing me with their love and support for my goals and for my family -John never ceases to remind me how much he loves me -Bee is keeping birds away from the flowers in the backyard. -Yesterday, Levi slept from 6:30pm-7am! -I finally got a walk/run in this week, and I was able to pick up right where I'd left off! -I HAVE A GOD WHO LOVES ME UNCONDITIONALLY

But once they actually say it...

We've known in the back of our minds that at some point Levi will have to have a new kidney. How far off was always the question. A big part of me thought that maybe once he got here, the damage to his kidney would be less than anticipated, and we could wait a good 15-20 years before we had to look at transplant. Today the APRN at the hospital actually said the words "kidney transplant" out loud. Well that changes everything. Now it's a reality. We're still looking at a couple of years down the road, as his body will have to be big enough for an adult sized kidney. We will probably have months, or years of dialysis before transplant. I realize that kidney transplants are one of the easiest, most routine things to do, but forgive me for not being excited about it.

I hate the fact that my baby is sick. I hate that he'll never get to play football or baseball. I hate that he'll be on medicine for the rest of his life. I hate the fact that all of my organs work just fine, and I've used and abused most of them, and my baby, who should be perfect, was born with his organs fighting against each other. I hate that I can protect him from so much, except for his own body. I hate that I feel like a bad mother for this.

I really wish that we were at home, decorating the Christmas tree, listening to Christmas music, going to the mall to shop and walk, getting ready to head back to work. I wish that our sense of normality and routine did not involve a hospital. I wish that my friends were the ones that we were spending time with, the ones that were getting to know him, instead of a team of doctors and nurses.

I'm thankful that we have all of this. That we're in a place that can give him this care. I'm glad that there's something that they can do, even if it's just to make him more comfortable. I know that God is protecting Levi and watching over him, and us, and I'm grateful for that.

5 pounds!

I can't believe it! Our tiny boy broke the 5 pound mark today! Tonight he weighed in at 5lbs 1oz. Considering when we got here on Thursday night he was 4lbs 10oz, I'm very excited!

On a negative note, we are back in the NICU. Thursday we went in for a routine pediatricians appointment which for Levi, always involves blood work. His blood work did not look good. The electrolytes were way out of wack. For a kid with one kidney and chronic renal failure, this signals to the doctor that the kidney is failing. Off to KC we go. Once we got here everything happened so quickly. They started running labs again and scheduling ultrasounds and getting him all checked out again. Come to find out, he has a uti. This is not good because that means that the antibiotic that he was on for his reflux was not doing the job. Once we got the labs back, we found out that the infection was actually in his bloodstream as well. This infection is similar to an E. coli bacteria. It can be common in kids with the reflux and hydronephrosis. Tomorrow they are going to do a spinal tap to make sure that the infection has not spread to his spinal column or his brain. If it has, the course of action is still the same, it just extends the process 11 days. His little body has done such a great job of fighting the infection. The doctors all kept asking us what signs of infection he was showing and the truth is- NONE! His body was fighting so hard against the infection, that it kept it at bay for days. It only truly showed itself once he got here and they pulled him off of his routine antibiotic and started letting new medicines and IV's do the work for him. Turns out, this infection is what was throwing his electrolyte levels off, and what was causing him to not gain any weight for a week. They have also put him on some mineral supplements to try to get his electrolyte levels back on track. So far, they need to work harder, but we're making steps in the right direction. The procedure on discharge for him is that he has to finish all of the antibiotics, get his electrolyte levels back in order, go two days with no signs of infection in his blood or urine, then be under observation for a few more days, then we'll be discharged. This comes out to 10-25 days. We're hoping to be home by Christmas. There's so much to tell about what's going on and how we're adjusting to life with a chronically ill kid. It's frustrating and scary to know that every time he gets the smallest germy bug, it could land him right back here. This is all part of our journey with Levi. We knew when he was still in utero that there was a good chance this would be our life once he was here. I hoped and prayed that this would not be the case, but God chose differently. I'm amazed that he trusts me to handle Levi. That God has given us HIS strength to make it through these trying times with Levi. I am so blessed to have a God and husband that trust me and empower me to be a good Mom to him.

Listening to music with Daddy today