An Entire YEAR of updates including TRANSPLANT!

Wow, I SUCK at blogging.

Here are a few things that happened since my last blog post...a freakin YEAR ago!

March 2014: On the 27th, Brody had a cystoscopy where his urologist looked at his bladder with a scope to determine if it was viable. After the procedure, the urologist said he wanted to do further studies but was very hopeful.  

3/27/14

April 2014: We had one of the hardest (on me) ER visits. It was a typical visit in that Brody's nephrostomy tube came out and we couldn't get it back in ourselves so we had to go to the ER. But this time was different because he's getting older and instead of just screaming and crying, he was screaming "Mommy!" and crying. I have always been able to keep my composure but not this time. I was bawling like a baby and trying my hardest to help the nurse hold him down, when all I really wanted to do was pick him up and hug him. Anyways, the resident urologist couldn't get the tube back in either so we got admitted and the next day, Brody had his 15th surgery. With all that poking and prodding though, Brody developed an infection within a few days and we were back in the hospital. Another surgery and an allergic reaction later we were out of there!

Uncle Nick visits 

May, 2014: Fox5 Atlanta came to our house and filmed a story on us as part of a Mother's day program. It was fun, but I'm my own worst critic and I did not like watching myself on TV.  I wish I had said something a little more profound. Oh well. The boys were cute. The story aired on May 9th on Good Day Atlanta. You can click here to see the story :) All in all it was a fun experience! And we may or may not have gotten a few comments from Brody's dialysis nurses about him rough housing with his brother (probably not smart with a perm-cath in his chest, a feeding tube in his stomach, and a nephrostomy tube in his kidney!). May was also a really fun (NOT) month because Brody's transplant surgeon and urologist wanted to make sure Brody's bladder was ok before going forward with transplant. Brody had several urodynamic studies done to see how much fluid his bladder could hold. In the words of his doctors, it is not smart to transplant a good kidney with a bad bladder. Don't get me wrong, I agreed with the doctors and I am very thankful these tests were done, but having to cath my own son and push fluid to "stretch" his bladder is anything but pleasant. But as it turns out, Brody's bladder is a. ok.!! Thank the Good Lord!

Being interviewed by Gurvir Dhindsa

Gorgeous spring day at Stone Mountain Park

June 2014: I don't think anything significant (medically) happened this month...just regular dialysis and more urodynamic studies.  We did enjoy the great outdoors as much as possible knowing that a long hospital stay was in our new future.  We went the the Renaissance Festival in Atlanta and Bear Hollow Zoo in Athens. We attended a few outdoor concerts in beautiful downtown Monroe, and toured the Atlanta Botanical Garden. Then we went on my most favorite hike to date. We hike the Tallulah Gorge floor. It was a tough hike but so much fun. We also climbed Stone Mountain a few times and hiked Amicalola Falls. Adam and I also celebrated our 6th wedding anniversary on June 20th.

Tallulah Gorge

July 2014: We got our Transplant date!! We were given a little less than a month's notice, surgery was scheduled for August 8th. Every emotion you could possibly imagine was running through our bodies. I had my pre-op on July 21st and Brody had his pre-op on July 23rd. That next weekend we took one last vacation before surgery. We spent 2 beautiful days exploring the breathtaking sights of Charleston, SC.

Headed to pre-op

Ryder playing in a fountain in Charleston, SC

August 2014: Brody had his last day of dialysis on Aug. 6th. The nurses and techs surprised him with a giant card that everybody signed, gifts, balloons, and lots of hugs (and a few tears). We miss everyone (especially Ms. Amy & Ms. Brittany), they always took such great care of our little man. We were contacted by a Public Relations Coordinator at CHOA and asked if it was ok to take some photographs of Brody and of course we said yes. The photographer was actually in both my OR and Brody's OR and then took some family photographs of right before we left the hospital. Anyways, Brody was admitted to CHOA on Thursday Aug. 7th. and then Friday, August 8th was the big day!! My mom went with me to the hospital at about 5:30a.m. and my surgery was scheduled for 8:00. Brody's surgery started (I think) about 30 minutes after mine. Both of our surgery's were smooth and perfect. The surgeon said my kidney was "cute" and the perfect size for Brody. The doctors ended up taking out Brody's diseased left kidney and most of his non-functioning right kidney. His new kidney turned pink right away and started producing urine just minutes after blood started running through it!! I was able to see Brody the very next day and was discharged on Sunday the 10th. It was quite a struggle to manage Brody's pain and he said in the PICU a few days longer than expected because of that. But once his pain was under control and he made it to a regular room he seemed to improve by leaps and bounds. He was seen by several therapists and was finally discharged on Aug. 20th. Unfortunately, Ryder was sick and had to stay at his grandparents house so he missed Brody's homecoming. I am so so so thankful for our amazing team of doctors including my surgeon, Dr. Turgeon, Brody's surgeon, Dr. Pearson, and Brody's urologist who has seen Brody since day 1, Dr. Elmore. And I have to give a special shout out to Dr. Elmore because he closed Brody up after the surgery and it is one of the prettiest scars I have ever seen...you can hardly even see it!! They are amazing to say the least.

CHOA flying the flag for Brody

transporting kidney from Emory to Egleston

PICU to transplant unit

September 2014: After transplant, Brody had to get labs done twice a week and visit his nephrologist once a week. His medications had to be fine tuned and his doses were changed with almost every appointment. Brody had a stent from his kidney to his bladder which was removed on the 11th. And thankfully, I was able to use FMLA and take off work to be with Brody and figure out our new normal. Navigating the fine line between protecting the health of your immune suppressed child and allowing him the freedom to experience the joys of childhood is often exhausting. I've learned to heavily rely on hand sanitizer and sanitizing wet wipes. Lysol is my new best friend. I carry face masks in the diaper bag.  And my childrens' hands actually went raw from over washing. Boo, germs.

Brothers 9/15/14

October 2014: Oh I love the fall. So beautiful! But it also is the start of flu season. Ugh. Brody had developed a cold (cough and congestion) and on Oct. 6th I took him for routine labs. The nurse noticed his labored breathing and we were sent down to the ER and admitted for "respiratory distress". I did not like that technical term one bit. He was tested for several viruses but thankfully he just had a common cold. It just hit him a little harder since his immune system is suppressed. Two weeks later, a stomach bug invaded the Johnson residence. First, Ryder got sick, then Brody (which landed him in the hospital, again), then Adam, and finally me. UGH! But by the time Halloween festivities rolled around everyone was well again. We even took a trip to Hiawassee and went to the top of Bell Mountain and then went further north and hiked up Whiteside Mountain. Being outside with my boys is so good for my soul! Our routine was again normalized when I started back to work on the 29th.

Bell Mountain

Love those fall colors!

sick :(

November 2014:  Brody started preschool!! He attends 1/2 days about 3 times a week depending on our schedule. He was so excited and I know he absolutely loves being around other kids his age.  We know the teachers well and we are so thankful we found a great place for him to learn and grow.

1st day of preschool

December 2014: Oh the holidays! Christmas parties and family gatherings.  Santa visits and story telling. Baked goodies and decorating. Doorbell and sleigh bells and schnitzel with noodles. And thankfully, only routine doctor and lab visits!

haha!

2015!!! Happy New Year!!!
January 2015: We celebrated Ryder's 5th birthday with a family dinner at Stevi B's, a party with all his friends at Pump it Up, and then we got to see the Wild Kratts Live! And as a part of a Christmas gift we also went to the Monster Jam which is always a good time. On the 20th we met with a hepatologist for the first time because Brody's liver enzymes keep creeping up and we're not sure why. Normally, medications or viruses can cause an increase in liver enzymes but we were told that none of Brody's medications should do that and his viral scans were all negative. Brody's blood tests also revealed that his neutrophil levels were extremely low. This meant he was very vulnerable to infections so he was not allowed to go to school anymore (until the levels were back up to normal), he had to avoid crowds, we had to watch him like a hawk for fevers, and he wasn't allowed to eat any raw fruits or veggies because of bacteria. Yes, lysol is still my BFF.

Happy 5th Birthday, Ryder!!

February 2015:  Brody was scheduled for a (routine) 6 month post-transplant kidney biopsy on the 6th. He had his regular blood work done a few days before and they also ran a few blood tests on his liver. All the liver tests came back within normal range and since that didn't help explain the enzymes issue, his doctor ordered a liver biopsy to be done at the same time as the kidney biopsy. It turned out that his hemoglobin level was severely low so on the night of  Feb. 5th, Brody was admitted for a blood transfusion. He received 1/2 a unit of blood before the biopsies and he was to receive the other 1/2 unit after the biopsies however, the doctor decided against giving him that second half unit. Doctors continued to keep a close eye on him, drawing labs once, sometimes twice, a week. His neutrophils were still low so Brody still had to stay home from school. The kidney biopsy showed his kidney is still working great and the liver biopsy showed that something is possibly wrong with his bile duct. The hepatologist talked to us about genetic testing and explained that in utero, a baby's kidney and liver develop at the same time so for whatever reason caused Brody's kidneys not to develop correctly might have also caused a malformation of his bile duct. Genetic testing is expensive and takes a long time so we still don't have any results yet.

It's Spider-Man!

March 2015: Brody's neutrophils were back up to normal so he was able to return to school on Mar. 2nd. But the very next day his doctor called and said his hemoglobin was low again and he needed another blood transfusion. He got one unit of blood and was referred to a hematologist. Thankfully this issue has seemed to stabilize and he seems to be doing ok.  We took a trip to the zoo with my mom for her birthday. Then we celebrated Brody's birthday with a family dinner at his favorite place, Chick-fil-a. Brody was battling an ear infection at the time so we didn't do to much celebrating. It seems as though we just can't keep him feeling good at the moment. Today (the 27th) he again woke up complaining about his ear. This will be the 3rd visit to the doctor this month for ear pain and a lingering cough. Other than that he is doing well. It's back to CHOA tomorrow for  more blood tests. We just keep on keeping on :)

getting some blood 3/3/15

My sick boy

I can't even begin to express my gratitude to all my family and friends for helping us get through this past year. All the prayers, calls, texts, messages, meals, etc. have been so appreciated and have not gone unnoticed. I seem to be in a constant state of frazzled so if I didn't get back to you or say thank you, I sincerely apologize. Every day is an adventure with boys and I wouldn't have it any other way.  

Fishing with Daddy at Tribble Mill Park 3/15/15

                                   

Living Donor Evaluation

From the very beginning, I have hoped and prayed that I would be not only a perfect match for Brody but also healthy enough to give up an organ.  I would give my life for my child (what parent wouldn't) so I most certainly can "share my spare" without hesitation. We had to wait for authorization from our insurance company, and wait for Brody to gain most of his weight but finally on August 13th, 2013 we were able to begin the evaluation process.  We met with one of Brody's transplant surgeons, a social worker, a psychologist, his nephrologist, a pharmacist, a child life specialist, a financial coordinator, his nutritionist, and his transplant coordinator. Brody also got ANOTHER ultrasound done (I have come to fear ultrasounds). Adam's sister, Abby, selflessly got tested the same day, along with me, to see if she was a match to donate. A few days later we found out that the initial blood tests showed we were BOTH a match for Brody! CHOA sent over my donor packet to Emory for further testing with plans to move on to Abby if something showed that wouldn't allow me to donate.

Brody learned to walk, began speech therapy, started hemodialysis, and the holidays came and went. He gained weight, he lost weight, and had a few surgeries in between.

On December 30th, 2013 I completed a 24 hour urine test (its a glamorous life, people) and more blood work. I passed those tests so an evaluation day was scheduled for January 28th, 2014 at Emory.  I had more blood tests and an EKG done. I talked to a living donor advocate, another social worker, another financial counselor, another psychiatrist, another nephrologist, and one of my transplant surgeons. I was suppose to have a chest x-ray and a CT scan that day as well but it started snowing, the news was reporting the traffic getting worse and worse, and I kept seeing facebook posts about people getting stranded and walking home, so I decided to leave the evaluation early. I don't know how but thankfully it only took me 3 hours to get home.
 
I went back for my chest x-ray and CT scan on February 11th. Funny. It snowed again that day...we live in GEORGIA. But the snow held off until we left the hospital. A week and a half later on February 20th, I got the call.  PHEW!! After six months of tests and waiting and more tests but mostly waiting I have been approved to donate my kidney!!

So now we continue to wait. haha. But we wait with a kidney ready to go! :)

1 year, 5 months, 5 days

On April 27th, 2012 Brody's doctor explained that they were over-dialyzing (is that a word?) him and they were going to skip dialysis for the day. One day quickly turned in to a week, then a few weeks, then a month. Brody came home from the NICU without requiring dialysis but only orders for biweekly lab work. His doctors kept predicting that he'd eventually have to go back on dialysis before receiving his transplant but it was just a waiting game.

Well, it has been 1 year, 5 months, and 5 days. His little body has finally outgrown his kidney function so tomorrow he will restart treatment.

We were given the option to try peritoneal dialysis (which is what he was on while in the NICU) but that requires surgery to put another catheter into his abdomen (which would make 3 tubes in his tiny round belly), and 8 hours of treatment every single night. We would have a machine at home and Adam and I would be trained to do it ourselves.

Our second option was hemodialysis which would have to be done at a pediatric dialysis clinic, 3 hours a day for 3 days per week and it would require a catheter in his chest.

Even though we live an hour from the closest pediatric dialysis clinic, and both Adam and I work full-time, we went with the second option. We saw how uncomfortable Brody was while on peritoneal dialysis (filling & draining his belly over and over) and to be honest, it was extremely nerve wracking...I'm not sure I would be able to sleep with that going on. Ugh, I get anxious just thinking about it.  We will make our schedules work- Adam can work longer hours if needed and even on the weekends, family has offered to help, and I can continue to work and build up sick time and take him myself every so often. We'll have our nights with only one machine to sound alarms (his feeding pump) and we know that this will be temporary. It's just a short bridge on our way to a transplant. He will hopefully feel much better (although he really doesn't act like what I would assume a sick baby to act like), eat better, and gain weight faster so we can reach our ultimate goal: transplant. Right now he is around 19 lbs and almost 19 months old. Just 3 more pounds to go...but that could take a few months.

I've already had the blood test done to see if I am a match to be a donor for Brody. Thankfully I am, as is my sister-in-law, Abby who also got tested. I hope to begin the rest of the work-up (MRI, ultrasound, etc.) within the next month or two to see if I'm healthy enough to donate... I hope we are celebrating Brody's second birthday fully recovered from transplant surgery. I can't wait to see him running after his brother and playing right along with his cousins.  Right now he is a master crawler, a very cautious climber, and quickly becoming a bona fide walker! He is walking more and more every day and gaining the confidence for speed! Although he still doesn't really want to eat food, he'll put anything he finds on the floor right in his mouth. We just started speech/feeding therapy and I'm excited to see how this helps him. He is so happy and giggles at anything Ryder does. He has his momma's temperament, and his daddy's sense of humor. He likes to play peek-a-boo and loves to be outside. He likes to watch Spider-Man and Mickey Mouse Clubhouse and will dance to any and all music. He can say "DaDa", "Uh-oh", "uh-uh" (as in "no"), and "DUH" (this can mean both "duck" and "dog". And I think "I want that" and "go over here" and "what?" and "I want to go out side" and "yes, I want my bottle"). He can say "down" and recently learned "go dawgs!" and no, he still hasn't said mama. He has also started pointing at things he wants. I wish I could bottle up the cuteness and keep it forever.

He gives the best hugs and the most perfect kisses- smack and all. 

So for now we continue to wait. Be patient, continue praying, and trust God to comfort and heal Brody. I know a transplant won't "cure" him and this is something he will have to deal with every single day for the rest of his life, but man will it be a sweet day.

Brody bear is ONE!

Well, it's official. My baby is the big 1.

We had a small gathering of family and friends at our house this past Sunday and what a beautiful day for a party it turned out to be! I could NOT have asked for better weather. And since Brody is nothing short of an All-Star...and since he finished his rookie year (I'm a dork, I know)...we went all out baseball style. We served hot dogs, and had some other concession stand food & drinks to round out the menu.

Need some peanuts and cracker jacks? I've got plenty.

(but who cares, no big deal, I want moooooore! ...yes, I now have these two songs stuck in my head. You too? you're welcome!)

We didn't have the grand "welcome home" party that I initially hoped to have when Brody left the NICU so it was nice to have people over and celebrate his birthday.  It was also really nice to get outside and take advantage of our porch, deck, trampoline(s), play ground, etc. after this long, wet winter we've had.

Did I mention the weather was gorgeous?

Of course our weekend wouldn't be complete without some sort of emergency. Big brother proved he doesn't let other people hog all the attention and decided to knock out another tooth. If you saw the picture Adam posted on facebook you know it had to have hurt. Ouch. I hurt just thinking about it. He actually didn't knock it all the way out, but just knocked it back to where the root was exposed and he couldn't close his mouth. The dentist took one quick look and said, "it's got to come out." Ugh. Anyways, he was a trooper and holds no hard feelings towards the dentist. And what's funny, Ryder's losing teeth and Brody's getting teeth. Brody's first tooth erupted on Feb. 27th and he got his second tooth on his birthday, March 11th.

Their smiles still melt my heart, with or without teeth.

In other exciting, or not so exciting news, I turn the big 3-0 this coming Monday. This is where I start pondering the whole concept of time and realize I really have no grasp on it. Wasn't I just starting college, wondering what the heck I was going to do with my life, and acting a fool? When the heck did I become a 30 year old wife and mother of two with a full time job?  Jeeze.

Speaking of, I cleaned out some of my junk from my mom's house just recently and found some amazing things that brought me back to my childhood. Stephanie, remember these??

The 80's were awesome. And that's all I have to say about that.

Anyways. I am so excited that my brothers and their families, as well as my grandmother, are all coming down to visit soon. I cannot wait to see everyone. Everyone's a little happier when the boys are around. ;)

And now I leave you with a rare family photo because I have slacked off and shamefully hardly ever take real (as in not from my iphone) pictures anymore.

"Cheese"

Rough Start

2013. What can I say about 2013? Well, just in the month of January we visited the pediatricians office 7 times, made 3 trips to the ER, had 2 routine lab appointments, got 1 X-ray, and was admitted to the hospital for an overnight stay. But who's counting?

It started around Christmas with a monstrous bug that plagued both boys and left Brody wheezing and coughing and in need of breathing treatments for several weeks. It turned into pneumonia and about the time he started feeling better his nephrostomy tube decided to abort ship. That's been a fun ride. The surgeon does not want to replace the tube because of the large amount of scar tissue in his kidney. Keep in mind this is the only way urine can leave his body. So we are using catheters/feeding tubes that we have to place in his side ourselves and replace every few days until further notice. And even though he went through a really weird few weeks of refusing his bottle (he would only drink on avg. 1.5oz at a time) and throwing up a lot (when your kidneys don't perform normally you can feel nauseous because your body is not eliminating waste product like it should), Brody's lab work has actually looked really good lately. He's been struggling with the weight gain since November...actually lost a little weight...but *knock on wood* *fingers crossed* *praying on bent knees* he actually seems hungry and eager for food the past few days. This is something very new and very exciting. Brody is also starting to become mobile - army crawling and rolling around everywhere. He'll make you dizzy! It is so cute and also so encouraging to see him progressing. He has been in physical therapy for a few months now and the therapist is quite impressed with his improvement.

...I'm often reminded that life is sometimes 2 steps forward, 1 step back. *sigh*


In other news, I now have a 3 year old! Ryder, he is something else. I honestly cannot say enough about how funny this kid is. He is curious, cuddly, and all around BOY. Seriously. I don't even know what to write because my mind is just flooded with things he's done and said and I want to write it all down so I don't forget but there is just sooo much!  ...my kid is just the best kid, all around, hands down. I'll leave it at that.  Anyways, with Christmas, the sickies, and everything else going on I almost forgot to plan his birthday party.

But that's our little secret ;)

With mommy brain in full gear, we celebrated in style at Chick-Fil-A in Monroe. They were excellent and took care of us from start to finish. I highly recommend having your kid's party there, especially if you don't have time to plan anything more than the time & date.  He enjoyed it and it was fun to watch him interacting with all his friends from school, and his cousins.  ...He is currently obsessed with tools, trucks, cars, trains, guns, knives (Lord, help), Batman, Spiderman, Superman, and loves to watch Curious George and Max & Ruby. If you spend more than 5 minutes with him, he'll probably ask you why you have bones and who makes the sun come up, even though I've answered these very questions hundreds of times. He also likes to hunt for bears, deer, and wolves...they are everywhere!! He takes pride in working with his daddy and is the only person who can make Brody laugh instantly, no matter what.

Adam and I have both been crazy busy. And if we're not busy we're crazy tired. I look forward to things slowing down a bit and maybe going on a date or two with my husband. When you have someone babysit your child all day, every day while at work, it's kind of hard to find a babysitter on a Friday or Saturday night...it's also hard to not feel an enormous amount of guilt when you choose not to spend every waking second with them when nights and weekends are all you have. I know one day I will miss my kids, annoy my husband because we're always together, and look back at this and laugh.

And now I am reminded I must start to plan a FIRST BIRTHDAY PARTY!!! lol. Sometimes I feel like I'm just trying to stay afloat. :)

Reflection

WOW. Is it really December 31, 2012?
I realize it has been 6 months since my last post and I feel like such a failure! I promised myself if I was going to write a blog that I was going to keep at it and not get this far behind! Oh man...what have I done?! LOL. I could try and get everyone up to speed with where Brody's at but 6 months is a lot to write about. So, I'd like to take this time and opportunity to reflect back on the past year. Makes sense, right?

January started the year started off with a bang as we learned about Brody. I am thankful that I was able to grieve before the birth of my sweet baby, even though it made for a difficult pregnancy. And although I couldn't fully know what was to come at least I was prepared so it didn't come as a shock when I was left all alone, with empty arms, in a hospital room that was once filled with doctors and nurses immediately after giving birth.

February was filled with non-stress tests, bio physical profiles and ultrasounds. I learned to trust as God does not make mistakes. God created this perfect baby for our family. I admit, I did cry a few times feeling like I was robbed of a perfect pregnancy and a perfect baby. I had no idea that I was just defining the word "perfect" incorrectly.

In March we welcomed sweet Brody. Adam and I grew a lot during this time. Basically, March, April, and May were all about finding the delicate balance it took to spend time with Brody, with Ryder, and with each other. I have never so desperately wanted to just have my family together for one day. One hour. One minute. Brody needed a lot of machines and medications just to keep him alive and if Adam and I weren't at the hospital we were calling and speaking to his doctors and nurses.

I learned how to change a diaper with all sorts of wires and tubes in the way. I learned how to take his vitals, place a feeding tube, and give a shot. I knew how to read his monitors and which wires were safe to unplug to pick him up. Day after day I left him in the care of the hospital only to go home empty handed. It wasn't easy trying to explain to a 2 year old about his little brother, whom he had never met but somehow I believe Ryder got it. He has a love for Brody that is beyond words. They have such a special bond and it's so amazing to witness.

Brody surprised everybody and came off dialysis after just 6 weeks! He eventually got weaned off the oxygen and has been breathing completely unassisted since the end of April. Both of which I am so beyond thankful for. Every day with out dialysis is a miracle and I continue to ask God to bless us and keep him off of dialysis until he can get a transplant. His doctor even talked to us several times about a trach and that he may never breath on his own. I love how my little boy has proven doctors wrong time and time again. :)

Our family was finally together for the first time at the end of May. I will never forget the look on Ryder's face when he came running down the sidewalk to see his little brother.

Brody was hospitalized in June and twice in July for infections. He got rid of his feeding tube mid-July and we had the Brody Johnson Benefit to raise money for his medical expenses. I cannot say thank you enough to everybody who had a hand in putting together that benefit. It was amazing. Thank you to those that came and supported us. Thank you to those that could not be there but prayed for us. Thank you. I had to take a lot of unpaid time from work and God has provided for our every need.

Brody had his 7th surgery in August and a nephrostomy bag was put in place. It is cumbersome to say the least but we are learning to live with it.

September and October were low key. Just a LOT of doctor appointments and blood testing. Through it all I still have the happiest baby in the whole world. The ultimate challenge of these two months were simply trying to get Brody to gain weight. We took a weekend trip to Nashville for a wedding and of course had to make a trip to the ER there too. But this time it was for Ryder. Not 30 minutes after arriving at the hotel he knocked out his front tooth! He might be the most accident prone child ever. The highlight of the year however (second to Brody being born, of course) is that Ryder is finally diaper free!  Hallelujah!! :) 

I started back to work mid-November which comes as a huge blessing. It means Brody is well enough that I can return to work. Brody also started physical therapy through Babies Can't Wait. He was evaluated and found to have "mild delays" and I can really tell the therapy is helping. I can't say enough good things about Babies Can't Wait.

Brody had his latest surgery at the beginning of December and has continued to pack on the pounds. He is in the less than 2 percentile for both height and weight but his doctor is happy with his own growth curve. He is currently around the 14 pound mark and can sit up on his own pretty well. He's finally starting to bear weight on his feet too. He has a contagious, heart-melting smile and loves the sound of his own voice. Oh, and Ryder chipped his other front tooth. ;)

Eight surgeries, 2 blood transfusions, hundreds of blood tests, ultrasounds, x-rays and doctor appointments, I'm happy 2012 is coming to a close. I'm looking forward to 2013, knowing it's going to be a crazy ride, because God is good all the time. He has gotten us through this year, making each one of us stronger, and I know he will take care of us through it all. Ryder and Brody are the best boys any mother could ask for. I thank God every day for both of them. I know they will both continue to surprise and amaze me.  Adam has stuck by my side, even during my darkest days, and I hope we can take more time for ourselves this coming year. A few more date nights maybe. I'm hoping Brody gets his transplant in early 2013 and I'm hoping Ryder doesn't hurt himself too bad!

I feel the need to write out my new years resolutions too. Maybe this will help me stick with them??  So here they are in no particular order:
1. Be kind, especially to my incorrigible, yet adorable, 3 year old.
2. Spend more time with Adam. (we will celebrate our 5 year anniv. in June)
3. Use my CFA coupons (haha)
4. Drink more water, take the stairs, and eat breakfast.
5. Run ...{shutter}
...I'm sure I'll come up with more, as I always do.

So here's to a wonderful 2013!

...Peace out '12. 

The Road Home

Ever had writer's block even when you've known exactly what you want to write about? Or feel like you're so behind it would just take forever to catch up so you just keep procrastinating over and over? Yeah, that's me. There are so many things I want to say but I just don't know how to write it all without sounding like a manic depressive chick with ADD. ...But I'll try...I only have a whole month of updates to write about.

The word "exhausted" doesn't quite seem adequate to describe how I've felt for the past month. The NICU grind seems easy compared to our new normal at home. I just want to sleep. (HA! I'm realizing sleep is a thing of the past.) So that's another reason why I haven't updated this blog in forever. I'm just too busy and too dang tired! We have a dr. appointment almost ever day and sometimes even multiple appointments in one day. Brody has several meds that are to be taken throughout the day and then there's the whole feeding regimen. Pump, fortify, decant, add meds, feed. All day long. :) But anyways, here it goes...

The road to home was drawn out and postponed several times. On May 1st we got our first approximate discharge date of May 7th. Then on May 4th we found out about the Pyloric Stenosis...surgery was postponed twice which then put our discharge date out to May 21st. And then the day before discharge he got his first infection. That pushed the date even further back until May 27th. Then, on May 26th, as Adam, Ryder and I were enjoying the morning playing outside, Dr. Elmore called and said Brody's pyelostomy was getting too tight and he needed to revise it. He gave me the choice: either do surgery now and stay in the NICU a few more days or go ahead and go home on the 27th and then come back in a week for surgery. I didn't think twice...so I hung up, we jumped in the car, and Brody had surgery that afternoon. We expected to stay 3 or 4 more days but on the morning of the 27th, Adam called and spoke to his nurse. When he hung up he said the sweetest words, and I will never forget the way he sounded when he said, "Brody's coming home!" ...Fear and excitement and nervousness and relief and every emotion imaginable flooded my body. THANK YOU GOD! After exactly 11 weeks, we finally had our entire family home under one roof.

During that last month in the NICU every time someone asked me "Do you know when Brody's coming home?" I just had to say "Not yet"...I didn't even want to mention that it was possible he'd be coming home on a certain day or that we were even discussing it. So I apologize to everyone for not sharing that info before now.

But anyways, we're home. Well, kinda. Ok, not really. He was in the NICU for 11 weeks, home for almost 3 weeks and now Brody's back in the hospital and had his 6th surgery today. So here's how that happened...On Tuesday, June 12th, Brody had an appointment with his urologist, Dr. Elmore. He noticed that the stoma of his pyelostomy was getting tight again so he put in a catheter and scheduled surgery for the following Wednesday, June 20th. He told me that the catheter would probably come out in a few days so if it does, just make sure the pyelostomy is still draining. The catheter came out just after 2 days. That Friday night Brody hardly slept and was very irritable. He also had a low grade fever and by Saturday had lost his appetite (what little he had). We drove down to the lake Saturday morning, which I was REALLY REALLY excited about...finally, a family day...a day we could all be together with NO DOCTOR APPOINTMENTS! ...and maybe I could get rid of this vampire glow. Anyways, we got to the lake, I changed his diaper and it was completely dry. So we turned around and off to the ER we went. We spent about 8.5 hrs in the ER...a urologist put another catheter in his pyelostomy to drain the urine (It took several attempts to get a catheter in) and they did a renal ultrasound to look at the kidneys. (Gah, I hate freakin ultrasounds. Too many bad memories.) His CRP was 15 (suppose to be less than one) which indicated an infection. He had a spinal tap done to rule out meningitis. And he had a EKG done because his potassium was 7.2 ("dangerously high" which can effect his heart). He was admitted into the PICU around midnight and started a round of antibiotics. We were told his surgery would most likely be postponed because the anesthesiologist wouldn't mess with him if he has an infection. Monday night he was transferred from the PICU to the general floor. And surprisingly, everyone agreed to go forward with surgery on wednesday. So here we are. Post surgery. Dr. Elmore opened up his pyelostomy, looked at his bladder and kidney with a scope, and guess what...turns out he DOES have a ureter!! It's just not hooked up right and part of it is not an open tube but more of a cord. So now the question is when and how do we reconstruct the urinary tract. Before transplant? After transplant? ...Brody's team of doctors are going to all meet up and discuss future plans this Friday. I'm anxiously awaiting to hear what they come up with.
...It's now Thursday June 21st...and today's big event is a blood transfusion (he's severally anemic and they just keep drawing and testing his blood...a lot). He's getting his last dose of IV antibiotics before being switched to oral antibiotics so hopefully, HOPEFULLY Brody can come back home tomorrow (or at the latest, Saturday).