A Little Info on Hudson's Condition

The questions I am probably asked most often about Hudson's condition is "what is it called?" and "what does it mean?" so I thought I would post a little information on it that made the most sense to me when I was first learning about it. That way, people can specifically know what we are dealing with and how to pray for him.

Diseases of the Red Blood Cells:

The most common condition affecting the red blood cells is anemia, a lower-than-normal number of red cells in the blood. Anemia is accompanied by a decrease in the amount of hemoglobin present in the blood. Anemia symptoms — such as pale skin, weakness, and a fast heart rate — happen because of the blood's reduced capacity for carrying oxygen. Causes of anemia can be grouped into two categories: anemia caused by insufficient RBC production and anemia caused by RBCs being destroyed too soon. (Hudson has anemia caused by RBCs being destroyed too soon).

When red blood cells are destroyed more quickly than normal by disease (this process is called hemolysis, pronounced: hih-mah-luh-sus), the bone marrow will make up for it by increasing production of new red cells to take their place. But if RBCs are destroyed faster than they can be replaced, a person will develop anemia.

Hereditary spherocytosis (pronounced: sfeer-o-sye-toe-sus). In this inherited condition, RBCs are misshapen (like tiny spheres, instead of disks) and especially fragile because of a genetic problem with a protein in the structure of the red blood cell. This fragility causes the cells to be easily destroyed.

An interesting thing about blood is that blood cells and some of the special proteins blood contains can be replaced or supplemented by giving a person blood from someone else. This process is called a transfusion. In addition to receiving whole-blood transfusions, people can also receive transfusions of a particular component of blood that they need. For example, someone can receive only platelets, red blood cells, or a clotting factor. When people donate blood, the whole blood can be separated into its different parts and used in this way.

It is so interesting to me just how unknown this disorder really is. I had never even heard of it until we started dealing with it with Hudson. Even though Wes had this same disorder, we had no idea what it was called or any real details about it. I wanted to learn as much about it as I could so I went to the library to look up some books on it. And I they did not have one single book on it!! Weird, huh? The Internet has been useful to some degree, but the Internet is also notorious for giving information that seems scary or isn't completely true or well-explained. So the best way I have learned things is to ask, ask, ask when we see a doctor. I still have a lot of questions and curiosity about this disorder that will just take time for me to feel more comfortable with.

Thank you for taking the time to pray for our Hudson and check in on him. I hope this post helped you learn a little but more about him.

Joy Comes in the Morning

This is literally what happened to me this morning, bright and early. God filled my heart up with pure joy. Just like every other appointment I make to get Hudson's blood count checked, I got the earliest appointment they have- 7:45. You may think that's crazy to be at Children's hospital at 7:45 in the morning but let me remind you I am the mother of a newborn and a 5 year old early bird. The other reason we like that early appointment time is because if the results are not-so-great then we can head over to the infusion clinic to get a blood transfusion without having to come back the next day. I am getting to be such a pro that I pack extra bottles, blankets, and snacks for big brother to leave in the car just in case it ends up being an all day visit. I wasn't expecting BAD results today really, because usually at the two week mark after a transfusion Hudson's blood count isn't necessarily GREAT but usually isn't low enough to warrant another transfusion THAT quickly. I was expecting his number to be around an 8. Double digit blood count numbers would be a dream come true but something we were told would probably never be the norm for Huddie. A normal baby of his age has a red blood cell count of 9-14 and they generally transfuse when it drops past 8. So I was okay with getting an 8 because it meant we were transfusion-free for about another week. In fact, every night we pray together as a family- Wes, Brian, Huddie, and me- and Wes prayed that the results would be good but that we would just be prepared and at peace for whatever the results may be. Well, this Mama had been praying something a little differently on my own. I asked God to not only give us good results but results that were better than they'd ever been. But in my heart I also knew that if they weren't, that was okay. At least we had doctors who were monitoring him closely and we would just get through another transfusion. But when we got there this morning, I should have known this day was going to be different. First off, Hudson didn't cry one single bit when he got his blood drawn- first time that's ever happened! He actually coo'd at the nurse when he finished. Then, we actually got our results much quicker than usual. When the nurse came out and said "Hudson?" I immediately jumped up and started towards her. But then she told me to sit back down that she would come to me. Dun dun dun. She had a HUGE smile on her face as she showed me the usually dreaded circled number- a 10!! My heart lept out of my chest! She said that he was holding onto his blood so much better. I thanked her about 75 times and then immediately turned to my mom and told her about my prayer. Hudson's RBC count had NEVER been that high that long after a transfusion. The only other time he had a double-digit number was after his first transfusion. But even them they checked it only FIVE days later (not 2 weeks like this time) so it was expected to be high. My mom and I stood in front of the elevators and had chills up and down our arms at how God had answered my prayer. Even Brian fist pumped at the good news. I was prepared and at peace to have to make that dreaded walk to get the IV going but God chose to bless us today in a different way. Yes, I've actually come to even feel blessed with a transfusion because it is God's way of helping our baby. Maybe He was just waiting for me to get to that point.

So tonight I will lay my head down and thank the Lord again for all his blessings He literally pours out to us each day. And I will continue to be bolder in my prayers, asking specifically for things. I have walked around all day with a smile that you couldn't slap off my face :) Pure joy.

Thank You

I have to say that there are times when I will post a prayer request for Hudson on Facebook and check back hours later and read where so many of you have responded. I can't even begin to explain how comforting and encouraging it is for me to walk into every single doctor appointment with Hudson knowing how many dear people are praying on his behalf. It is almost like a traveling support system. All I have to do is get on my phone and I am reminded of all the wonderful people God has placed in my life. Thank you for taking the time to read my post and leave a comment of concern and saying you will pray for our boy. It lifts me up more than you will ever know. There have been so many people who have blessed our family over the past 8 weeks. Thank you to those who have sent messages or texts to check on Hudson "just because". Thank you to the very special people who have reposted my prayer requests on their own page to gather more prayer warriors for him. Thank you to a sweet friend of mine who made us dinner after Hudson's first transfusion so we would have one less thing to do when we got home. Thank you to a long time family friend who took the time to send us a card to let us know she had her LifeGroup praying for our son. I know this is why our family has been able to get through the times when we have been scared, down or discouraged. I have seen examples of what true friends really are more in the last 2 months than in my entire life. Thank you from the bottom of my heart.

Philippians 1:3
"Every time you cross my mind, I break out in exclamations of thanks to God"

Fear

Since I had to (reluctantly) start formula feeding Hudson, Wes and I have come up with a little system that helps us both get some rest. We take turns getting up to feed Hudson since he is only waking up once a night to eat. It is so nice to know that you get a full nights rest every other night and has really helped me get better from the sickness that I've been dealing with and extreme exhaustion resulting from the stress of dealing with Hudson's disorder that I have brought on myself. That is why I am up right now and have the time to actually blog- I am on "Hudson Duty" tonight.

It is so hard to let go completely of the worry that has come with us finding out about Hudson's condition. Wes doesn't have a problem with this- he's been through it, knows its manageable and deals with it. Me, on the other hand, does what I do best- worry. Our pastor did a message on this shortly after Hudson was born (God's perfect timing) and how our greatest fears reveal where we trust God the least. When he said that, it devastated me because I never thought of my worrying as saying to God "I don't really trust you with this" but it really does! If I really trusted Him wholly in this area, then I would not have the need to worry. I can't imagine saying that to God in that way, but my actions in worrying say exactly that. I decided right then that I would consciously not allow myself to go there with worry whenever I was faced with Hudson's health in any way. I wanted to show God that I trust Him with my words AND actions. The next doctors appointment we had after that, I did exactly that. And I honestly had no worry. But then we found out we had to do another blood transfusion and you know why I started to do? Worry. I got very sick and had to spend some time in the emergency room the night before Hudson's appointment. I had a pretty nasty virus that made me have to keep away from my kids until it had passed. On top of being extremely sick and in excruciating pain, I couldn't go with Wes to Hudson's appointment the next day to check his blood levels. And that's when I decided I would not worry this time. And I didn't. Until Wes called to tell me they were on their way to get transfused. Boy, did I have a reality check with just how weak my flesh is. I was disgusted with how quickly I had decided to stop trusting God with my son's problem and start "handling" it on my own by worrying.

I have really, really felt like for the last few months that Satan has really been trying to attack my family in so many ways and attacking me by using my struggle with worrying. Back in May, Wes unexpectedly had his overtime stopped at his job which meant with me quitting work after Hudson was born, that we would be hundreds of dollars in the negative every pay day with our bills. So our options were Wes getting a second job or me continuing to work. We were upset and uncertain of what we were going to do for money but determined that my place was at home with the boys and not working. We decided that I would keep working until the day Hudson came, which came earlier than expected and as a surprise. Then came all the chaos of Hudson's disorder. And doctor appointments out the wazoo. Which meant MORE bills that we wouldn't be able to pay. And Satan just preyed on my weakness of worrying. I could sense that more than anything. I could literally see all the ways he was trying to get in my head and steal my joy and turn me away from God. But you know what happened? I kept fighting it. And even though I failed many, many times by beginning to worry, I kept fighting it. I was determined to get a grip on this disease of worrying. Kept asking God to help me overcome it and to help guide and provide for our family. And He sure did.

Wes had decided to just start applying for some part-time work to supplement our income and a few new full-time positions, too (just to see what would happen). Well, God provided a new job for him that pays him enough that it's like I never quit working (he actually got the call to come interview when we were driving home from the hospital with our new baby boy). He also blessed us when my job unexpectedly paid me a full paycheck when Hudson was born even though I didn't work a full pay period because he came early. Somehow we have been able to save enough on our grocery and gas budget to be able to slowly start paying off some of those medical bills, too. And that day of the transfusion when I couldn't be there? Hudson was a rock star and I was able to get well quickly and be with my boys again. God was faithful even when I wasn't being faithful by worrying. I know I am a work in progress and I am going to change that part of me with God helping me. I am determined to learn to live a life without worry. It seems sometimes like I will never be able to overcome that, but then I look at what God has already helped me overcome and it doesn't seem so unreachable anymore.

Honesty

I am sitting here in the doctors office for my 6 week visit since having Hudson and I have to say it is bringing up all kinds of emotions for me. The last time I was here, when I left this place, I had no idea what was about to happen. I had no idea that later that same day I would give birth to my beautiful baby boy. I also had no idea that one of my greatest joys in life would turn into one of my darkest times. After a pretty smooth delivery, we finally had our baby Hudson but quickly began to deal with what seemed like one crisis after another. First, we were dealing with what we thought was just typical jaundice. Then it soon became more seriousq as Hudson's levels grew higher and higher causing him to be on 2 bililights to bring it down and an extra 2 days in the hospital. We could hardly even hold our sweet boy. The levels would go down a bit and then back up. All this happened within 24 hours of his birth so we were told there was something causing this because it typically does not show up that fast. After many tests, our pediatrician figured out that what we were dealing with was probably spherocytosis, a rare blood disorder. Wes had this disorder as a child but we had no idea it was something that could be passed on. We found out it actually has a 50/50 chance of being passed on, so our offs weren't great. That is what caused the high jaundice so soon. I remembered hearing Wes and his mom talk about how he had to heal with this as a child. Your red blood cells are shaped differently with spherocytosis and therefore your spleen attacks them causing sometimes severe anemia. The only treatment for it is to have your spleen removed which doesn't change the shape of the cells but keeps the spleen from destroying them obviously. Wes had his spleen removed at age 9 and has been healthy as a horse ever since. But you have to be at least 5 or 6 now to have it removed. That means the only way to treat it until then is to have blood transfusions as needed. Newborns and babies up to a year are even more likely to have to have multiple transfusions as the body begins stabilizing better with age. I knew this was a possibility but I was hoping Hudson would defy all those odds and not have to have any. Here we are 6 weeks later and he has had two. The ups and downs and all the doctors appointments and blood draws have really taken a toll on me as a mom. I have physically and emotionally worried myself sick at times. It has been difficult for all of us. Watching your baby get stuck and poked with needles once sometimes twice a week is awful. Hearing the word "transfusion" in regards to your 2 week old baby is a nightmare. But even with all the negative emotions we were still able to see the goodness of God. When we went to children's hospital for Hudson's first specialist appointment, the blood disorder doctors are with the children's cancer doctors. We saw little kids with no hair from treatment. We realized how thankful we were that even though we hated what Hudson was having to deal with, we at least knew it was manageable. I have learned so many things through the last 6 weeks. I have experienced every emotion possible. Some very dark and scary where all I could do was get on my knees and cry out to God. He has sustained us with supportive family and friends and answered prayers. We have received so many blessings from others that we could never say thank you enough for. Thank you to each person who prayed for us and sweet Hudson. Thank you to all the people who donate blood on a regular basis so that kids like Hudson have it quickly when they need it. Please don't stop praying for us as we have a long journey ahead.

What Am I Thinking?!

I don't know what is going on with me, but I am terrified of having this baby.  I mean, overwhelmingly nervous.  I have no idea why either.  I mean, this ain't my first rodeo.  The way I have been obsessing over everything, you would think I have never experienced this before.  I try really hard not to think about all of the stuff that comes with delivering a baby, but I keep thinking of all the "bad" stuff.  How I will feel physically after, how tired I will be, how I have NO idea how to manage a 4 year old and a newborn.  I really think part of it is because I have been so tired and so physically uncomfortable and sooo emotional lately that adding those thoughts pushes me over the edge.  I know I will feel better when I am not carrying around baby inside me.  And I know I have a wonderful husband who will help me so much. In fact, he actually said (and I should have recorded this) that as long as Hudson smelled like that baby lotion smell, he would never put him down.  Which means I will be purchasing Johnson & Johnson by the truckloads.  More importantly, I know I will have a beautiful new son to watch and grow with the added bonus of getting to experience my sweet Brian getting to be a big brother for the first time.

This is my biggest problem in life.  My mom calls it "borrowing trouble."  I call it "being stupid."  I worry about silly things just to have something to worry about.  This is seriously my biggest struggle in life.  I have made progress in this (thank you, Lord!) but still have a looooooong way to go.  Wes doesn't get this at all about me because he is totally the opposite.  I hope Hudson takes after him with that.  I reeeeaaaaalllllllly do.

In the meantime, if you think about it, could you please pray for me?  Pray that I will stop this craziness and just leave the whole experience in God's hands and (GASP) maybe actually enjoy it?  I really want to enjoy these last few weeks that I have of being pregnant.  I know I will never again feel a baby moving in my stomach again or feel the aches and pains that come with being 9 months pregnant.  As (un)enjoyable as these moments are, I really do want to remember them.  And I want to be able to be calm and stress free when the fun stuff really starts to happen.  And by fun stuff, I mean labor :)

Put Up Your Dukes!

The older Brian gets, the more real parenting seems to become for me. It is so easy to protect your kids when they are babies.  Other babies can't really be "mean" to yours because they are so limited on what they are able to do.  They can't say mean words or reject them.  They may grab a toy out of your baby's hand, but babies are oblivious to that kind of stuff.  But then they get a little older and you start to see the sinful human nature coming out in those once innocent babies.  And sometimes it's even YOUR precious baby that shows that side (what? NEVER! Ha!).  But it still hurts.  It makes you sad when you see your child discovering the ugliness of the world.  The first time they get rejected on the playground.  Or someone says something that hurts their feelings.  With me, it makes the Mama Bear in me come out and want to attack and scoop him up and take him somewhere far away!

Brian is such a social kid.  Always has been.  He is always joyful, always eager to talk to people.  He wants to be friends with everyone.  He will go up, introduce himself and want to know your name.  Unfortunately with this being his first year of school, he is learning that not everyone is that same way that he is.  And mama is learning this too.  I have never seen Brian shy away from playing or talking to ANY other kid. Yet I have seen him so excited to see one of his classmates outside of school only to get a cold response because they are with a group of big kids and are too cool to be talking to Brian.  I also know that a lot of kids are on the shy side at this age (I was one of them) and it might be a little uncomfortable for them to have this bubbling ball of friendliness come bouncing up to them.    I have especially noticed this because Brian is so young compared to most of the kids in his class.  It is so obvious at this age what several months difference is like in the social realm of kiddos.  I have even noticed on field trips that there seem to be "cliques" of boys already!  That is crazy to me!  Especially with boys!  But good grief it makes me mad when that happens.  In my mind, he should have at least a few years before having to deal with this kind of stuff.  But I know things are different in today's world.  And the sad thing is, he is going to deal with that for the rest of his life.  There are going to be some kids who don't want to play with him.  There are going to be kids who don't like his style and don't respond to his friendliness in the way I think they should.  But you know what?  I am going to try my very hardest to build my son up to be confident enough in himself and who God made him that it won't bring him down. I don't want him to change a thing about the way he does things now at 4 years old.  You know why?  Because it just might be Brian who walks up to that shy kid (like I used to be) that has no one and says "Hi, I'm Brian George.  What's your name?"  and turns that kid's day around.  Or God may use his always bright and cheerful attitude to lift someone's spirits who has had a bad day.  Or is just that smiling face that you can always count on to be consistently nice to you.  I'm sure that as Brian gets older, he will start to catch on to those differences in people and may change his approach a little, but I never want him to stop being who he is.

Does it make me want to put on the gloves and start taking names when I feel like my son is being mistreated?  Heck yes!  But I know we have all been guilty at some point in being that way, myself and Brian included.   And even though experiencing the ugliness of this world is inevitable, it doesn't have to change you. It doesn't have to bring you down.  It can be a way to teach your children how to handle it the way Jesus would.  And it can also be a way to calm a mama down and make her realize that Jesus wouldn't put on boxing gloves and start taking names.  Especially with preschoolers :)