Chronic Kidney Disease

My last post was Beckham's birth story that I wrote shortly after he was born. And since this is Beckham's blog I thought it was necessary to include his arrival and crucial first few weeks of life. Reading back on it was so interesting for me because it took me right back to those thoughts and feelings at the time, which were mostly confusion and fear. Now that it has been a year my feelings are so different. It has been such a learning experience for our family but I now understand and completely agree with the statement "knowledge is power." We were so scared in the first few weeks of his life because we didn't understand his disease, we didn't know how or why it had happened, and we didn't quite understand what this meant for him.

Beckham has Chronic Kidney Disease. On a scale of 1-5 (5 being the worst) he is a level 5 and has been since birth. His kidneys a whole year later are functioning at about 12%. He will need a kidney transplant sometime soon but it is not critical yet and he is actually not quite big enough to get one just yet so we pray they hold on until he is. To recap this past year, Beckham has been in the hospital about 4 times. Because his kidneys don't work correctly his body gets rid of all the water and salt so he pretty much pees constantly; therefore he gets dehydrated very easily. Once he is dehydrated it throws off all his electrolytes (which we give him everyday) and sends his body into a spiral of constant vomiting. He was hospitalized for that twice. He also is very likely to get UTIs. He has bladder reflux which means that the urine in the bladder goes back up to the kidneys which is what caused the major damage in the first place. We were told from the beginning that if he gets an infection his kidneys are done. Well he got one when he was only a few months old, but we were very blessed that it didn't cause any further damage. We caught it pretty early but we know that it is through the faith and prayers of our family and friends that he remained stable.

Eating for Beckham has been a constant battle his whole life. There are so many toxins in his blood that he often feels sick and doesn't want to eat anything. This is normal with CKD which is why most kids end up with a feeding tube. At about 8 months old we couldn't get him to really take anything by mouth. And what he would take he would throw up a few hours later. He wasn't getting the nourishment he needed which would affect his development if we didn't do something about it. At 8 months old he had his surgery for a G-tube. It was so hard for me at first but I am so very grateful for it now. He has gained so much weight and is actually my biggest baby at a year old! It was definitely a learning curve but it has become a way of life for us now, even his brothers help him get untangled and move his backpack when he rolls too far away from it. It is a part of him now and a very important part of his story.

Beckham Altsek Fershtut

...came into the world on Sunday August 28, 2011 at 11:43 am. He weighed 5 lbs 3 oz and was 19 in long. I went into labor in the middle of the night on Saturday but I swear I had been in labor since Thursday afternoon. The contractions were not consistent so we waited to go in. We finally decided to go to the hospital just to get checked on Sunday morning because I didn't want to wait too long to go like I did with Stratton. We were supposed to speak in church at 11:00 am that morning and we thought we would be back in time. We got to the hospital and found out I was indeed in labor and not only was the baby breach but way far down in the birth canal and stuck. He was trying to come out butt first. So we called the bishopric and bailed on our talks unfortunately at the very last minute. My doctor got there and said we would be doing an emergency c-section since the baby could not be turned.

Now at this point we had been told by 2 different doctors in 2 different states that we were having a girl. Neither of them were 100% sure but both sounded pretty confident that it was a girl. I guess that is what happens when baby is folded in half with legs in the way the whole pregnancy. Right before they took me back we were waiting for my parents to come get the kids and I asked the boys if they were excited to get a new baby sister. Carson said yes excitedly and Stratton said "no, brother" then Carson got upset and explained that they were having a sister but Stratty was very insistent and said "no, brother". I told Carson to let it go because he is little and doesn't understand yet (little did I know he understood more than the rest of us at the time).

They took me into the operating room (scariest room ever btw) and hooked me up to everything. I got an epidural and I think an extra large dose of anti anxiety medication since I couldn't stop shaking. We joked with the doctor and the nurse about what we would do if it came out a boy and then the cutting began. It was very uncomfortable and all I could think about was what they were doing so I was panicking. Ari was right by my side the whole time. Finally the doctor announced "yep, it's a boy". It didn't register with me but Ari made sure he was serious and then turned to me and said "we have 3 little boys!" and that is when I started getting really confused. I have never actually heard of this happening before, we were all in shock.

All I kept thinking about was that I had already filled out the birth certificate form right before he was born and put our girl name and checked the female box so I was going to need that back. At that point all the meds kicked in and I passed out for a bit. When I finally came to my parents and my boys were in the room with me. I was so worried about my baby since I hadn't even seen him yet. Everyone said he was beautiful and the nurses were still looking at him. He had a pretty rough delivery because he got stuck and they had a hard time getting him out.

I could not be happier that we had a little boy. I just kept thinking how lucky I was to have him. We instantly became famous in the hospital as the couple who thought they were having a girl and got a surprise! What could be better than 3 boys? They are the best. Anyway, after looking at him they found he had a tear in his lungs and air was leaking into his chest cavity. They had give him an x-ray so I only got to see him (not even hold him) for about 1 min before they wheeled me out to get the x-ray machine into his room. They had to stick a needle into his chest and suck out all the air. They were going to put a tube in his chest but before they could do that (this was later that night) the tear started to seal up. We were so grateful. I finally got to see him an hold him that night at about 10:30 pm after making a painful trip down to the NICU. He was so tiny and so precious and had so many ivs and tubes coming out of him it broke my heart. He had a giant IV in his head which made me so sad. But I knew he was getting great care in the NICU.

He had a hard time eating so after about 2 days they put in a feeding tube. He had a hard time keeping any food down at all. On Wednesday one of the nurses ordered some blood work to be done and the results that came back were not good. It showed that his kidneys were not functioning correctly and there were other problems with his sodium levels and a few other things. They also found that his arms don't bend all the way straight and his joints are large for his age and he has a hip click (poor guy!). The nurses were in contact with Primary Children's hospital once they found the problem with his kidneys and PCMC deicded that they needed him there to see the specialists. So on Friday morning he was transferred by ambulance to PCMC and has been there ever since. He has been very popular since he arrived and has had a lot of doctors, nurses, and specialists looking at him. They found that he has reflux in his kidneys which means that the urine has been going from his bladder back up into his kidneys. This happened before he was born and the damage has already been done. Right now they are watching it and hoping that his little body will turn it around and it will get better and not worse. He is on antibiotics because he has a high risk of getting an infection.

Unfortunately however this all happened right before a long weekend so we won't have anymore answers until after Tuesday which will be his big day. He has the kidney specialist, the genetic specialist, the speech therapist (to work with his swallowing so he will eat without the feeding tube), and a physical therapist (to work with his arms and his hips) coming to check him out. We are praying that our little boy will recover and be able to come home soon.

We are so grateful that the nurse at McKay Dee decided to run the initial blood work because without that we would not have found out about his kidneys and it could have been a lot worse before we caught it.

Here are some pictures of his first week. We will update again once we have more information from his doctors. We appreciate all the kind words and prayers that have been said on his behalf.

His first few minutes in the world

His legs would not lay flat for a long time because of the position he was in inside the womb.

This is still the closest my boys have been to their brother since he was born and it is the only time they have seen him so far. My parents were so great to entertain them during the birth.

The first time I held my new baby!

Sweet boy

I was on a lot of medication if you can't tell.

In the NICU at Primary Children's with his Dad.

He is definitely a Richins. He looks most like my family.

His bink is almost as big as his whole face.

Eyes finally open for a picture.

Big yawn! We love you Beckham!

Beckham's Story

Today is Beckham's first birthday. It has been such a trying but rewarding year with our little boy. He has been so strong and so happy through everything he has gone through thus far. Beckham has already taught us so much and I don't want to forget any of it. I am starting this blog for our family to remember this time in our lives, for Beckham to remember what he has endured, and for those who know and love him to keep up on his status. I am going to recap this past year in a series of posts and then I will be able to keep up with all the current things happening in his life. We have appreciated and felt all of the support and prayers offered on his behalf.

Beckham's 1st Birthday

Brothers