He's Got The Whole World In His Hands

Jackson finally decided he was going to take a nap today so now I can have a chance to write. The past couple of weeks have been a lot of work. Jackson's doctors are going to perform his first surgery, one of probably many unfortunately. His surgery is scheduled for March 24th, hopefully, unless they change the date on me again. The schedulers says its for sure the 24th now so let's cross our fingers!

We met with the orthopedic surgeon on Friday to finalize the plans for Jackson. Basically, they are going to remove the toes and a good potion of his right foot. This will created a foot that is the right size for him and help him out when it's time for shoes and walking. It sounds like a terrible thing but really it's going to be best for Jackson. At least that's what I keep telling myself over and over when I think about how they are going to remove part of my baby's foot. I think about how every woman I knew that had babies would ask doctor if their baby had all 10 toes and fingers. It makes me laugh now. If you really knew how unimportant those things are for you to have normal life, no one would care to count them.

I am nervous but there is only so much I can do. I've made sure he has the right doctors. I've asked all the questions I could think of and hopefully I've got all the answers I need. If I sat around and thought about all the things that could go wrong I wouldn't accomplish anything besides driving myself crazy. All I can do now is trust. I need to trust that God has it in his hands and I need to lean on Him.

Proverbs 3:5-6 (King James Version)

 ⁵Trust in the LORD with all thine heart; and lean not unto thine own understanding.
 ⁶In all thy ways acknowledge him, and he shall direct thy paths

Some People Have No Sense

I know that sounds like a harsh title but its the truth. I've encountered this 'same' person so many times I can't keep track. This is what happens...

Jackson and I are at the fabric store waiting in line at the checkout. There is an older woman, probably 60s, standing behind me. I'm not paying attention to this lady because I'm trying to keep Jackson happy until I can get out of here. This lady says to me, "Excuse me". I didn't think she was talking to me until I hear it again, followed by a tap on my shoulder, "Excuse me". I turn around and say, "yes?". She says "I don't mean to be rude (while pointing at Jackson's foot) but does your baby have a club foot?" Honestly! Some people have no sense! Why do people think its completely ok to ask me what is wrong with my baby? It blows my mind. This happens to me all most every time I take Jackson out. By now, I expect this to happen so I just give the person some lengthy medical explanation that I know they don't understand, smile and walk away.

I was just thinking about it the other day. What if the person they were asking didn't have the attitude about their baby's condition like I do? What if I was a woman that was upset and depressed about my situation and some stranger in a store decided to point out my baby's differences? I really would like to look at these people that think it's ok to ask these questions and say "do you see a child in a wheelchair and ask what happened? Do you ask a child with no hair if they have cancer? What makes it ok for you, a stranger, to ask me anything regarding my child?"

I've come very close to asking these questions to the rude people myself but then that just makes me jerk just like them. I've always been told to kill them with kindness and that's exactly what I do. I just wish one day they'll get it. If your statement or question begins with "I don't mean to be rude" keep your thoughts to yourself. :)

Just Another Day

I've was woken up this morning to Jackson yelling from the other room. He really doesn't know any words yet so its like a "ah ah ah ah ah" noise. He makes me laugh every time he yells for me. By 9am I'm on the phone trying to deal with insurance companies, the hospital, nurses, home care and BCMH. O the joys of life, all the while feeding Jackson his breakfast. By now I think I can say I've become a Pro at dealing with all these people but there is always one person that thinks I'm a idiot and what she says is gold. When I encounter this person, I just take a deep breath and ignore their obvious hate for their job and I try to crack a joke. This usually doesn't get a laugh but hey, I think I'm funny!

I try to keep Jackson up for long enough so that he gets his morning 'business' out of the way. It never works out. Every time I put him down for his nap, his 'business' wakes him up 15 minutes into it. So now that it's taken care of for the morning we're playing until he's sleepy again.

I can't believe how big Jackson is getting these days. He's a little over 8 months old now and he's starting to look like such a little boy. My little tiny baby is gone. I put away all the little clothes that don't fit him anymore and I reminisce about how little he used to be! I remember having to buy smaller clothes because the ones I had he was swimming in! I can't help to miss by newborn baby but I love to see him discover some many new things. Just this week, he is trying to move all over the place. He can't crawl due to his one foot getting in the way but he definetly figures out how to get around. He has figured out how to roll over and over again until he reaches the Blu Ray player and plays with the buttons. He's starting to figure out what he can and can't play with. He gets all the way up to it and looks right at me before he touches it. He really does crack me up.

Jackson's bath last night went so well! Pete and I both usually dread  giving him a bath and changing his wraps. It's like messing with disaster. His skin is so sensitive on his legs that even the slightest touch can cause the blebs to break open and bleed. It doesn't bother Jackson but its obviously a mess to deal with. He was having a issue with the dryness of  that skin sticking to the stocking that goes between his skin and the wraps themselves. So, every time we took them off, the skin would break open. Last time we went to the DR they gave us an ointment to try and its a miracle in a tube! All the dryness is gone and his stocking doesn't stick! The best part is, there hasn't been any bleeding! Jackson was getting so irritated by the dryness because he wanted to scratch it. I can't imagine how frustration it would be to have an itch you can't scratch! But with this new ointment, he's so calm. He even LIKED his bath! He splashed around and didn't fuss at all! It was amazing. He even let me take pictures of him, and he was smiling! Every mom needs the embarrassing bath tub shot!

I've realized that everyday with Jackson's condition is a learning experience for us. There really isn't a book of all the things you need to know that work and that don't. Which I guess there really isn't a book like that for any baby so maybe our experiences really aren't that different from other parents. All I know is that thing with Jackson is getting better and better each day. I'm so amazed how all these things work themselves out. Some call it a coincidence, I call it "a God thing".

The Months After Leaving The Hospital

Listening to Lady Antebellum: Loves' Lookin Good On You

Things with Jackson were going pretty good. We would go back to Cincinnati for his check-ups once a month. The group he works with there is awesome. We have had to hospitalized Jackson a few times since then. He had some cellulitius in his right foot, it's an infection of the skin. Its pretty painful and needed to be treated with IV antibiotics. Any type of infection could cause major problems with Jackson because of his condition. He was also admitted because he was bleeding internally in his butt. He has some cysts there that can rupture under the skin. Since that happened, he had to have a blood transfusion to make up for the loss.

Jackson has been home with us since October without any hospitalization, Praise the Lord! We found what works for wrapping his legs and what doesn't. He is actually stable. It took 6 months to get him that way but I'm so thankful he is. In September, he had a MRI done to find out what was going on internally with the KT. Their findings were about what they thought it would be. He does have some internal cysts in his abdomen but once again THANK GOD they don't interfere with his organs. If I say it once, I'll say it a million times, WE ARE BLESSED!

It took awhile for us to get used to the fact that our son has a disability. Honestly, writing this blog is the first time I've really let myself feel what we went though. I wrote it in my journal with a very factual attitude. I felt like I couldn't let my emotions show. I had to be strong. I couldn't let myself get in the way of doing what I had to do for my son. I needed to do this.  I would lay in bed at night and go over these events and maybe let out a few tears but that was it. It drove me nuts. I just wanted to get it all out, all at once and be done with me. Put it in my memories as "dealt with". I think that is usually the problem when people have problems. They never recognize them and deal with it and let it go. I feel like I have a huge weight lifted off my shoulders.

I'm letting go of the past and moving ahead with our future. I can't wait to see all the things it is going to hold for my family.

Home Coming

I love music and I think there is a song out there than can completely describe exactly how you feel at the moment. I'm llistening to Nora Jones: The Long Day Is Over.

6/29/10

This day couldn't have come soon enough. The night before I was at the RM house with Linda (Pete's Mom). I was talking to Pete on the phone and I was burnt out. I was at my limit with how much more of this I can take. I was exhausted physically and mentally. I wanted to take Jackson and go home. I think God heard my pleas that night because they next morning they told me we were being discharged. God doesn't give you more than you can handle and he knew that was all I could handle.

I called Pete and told him the good news. Linda and I let out our tears of joy and thanked God. It was over and we could begin our new lives together as a family. We got all of Jackson stuff packed up and off we went. I couldn't get out of there fast enough. I sat in the back with Jackson on the way home and Daddy drove us. Grandma and Mimi met us at the house. Just being home with Jackson and Pete made it all perfect.

Letters to Jackson Cont.

6/19/10

Daddy and I went to visit you first thing in the morning. You were all bundled up snoozing away. You love being snuggled up tight in your blanket with your frog lovie on your head. We had to take a picture before you moved it. You did well with you feeding yesterday so they up-ed it a bit. They also let me try and feed you another bottle. You haven't got it down just yet but you're getting better at it each time we try! You fall asleep each time I try. I guess you're just so comfortable in my arms that you just want to cuddle and fall asleep. They let me 'kangaroo' you today. That's where they let you lay on my chest, skin to skin. You loved it. You just laid there, listening to my heartbeat, and fell into such a deep sleep. It's good for your development to be close to me like that. Mimi spent the day with us. Grandpa, Noe and Terri also stopped by to see you.  

Daddy went to the store after we left you today. We needed to get some more outfits that were small enough for you to wear. You were 5lb 14 oz when you were born so we needed some tiny clothes. We weren't expecting you to be that small, especially if you stayed in my belly for the full time! You would have been huge! I hate leaving you at night. I can't wait for the day when I can take you home and never let you out of my sight.

6/20-6/28

Over the next week things improved a lot. They took you off your oxygen. Your glucose levels balanced out on their own. Your pulmonary, liver and kidney issues all resolved themselves. All we were working on now is you feeding from a bottle for all your feedings. You have been doing great so we should be able to take you home soon!

Letters to Jackson cont.

6/13/10

You got excited about something today and you burst open one of the bigger blebs on your leg. Daddy kinda freaked out a bit but surprisingly I didn't. I was strangely calm. I had dad get the nurse and I helped the nurse stop the bleeding. You didn't seemed bothered by it at all. I thanked God for not letting these things bother you. Since you bled on your bed they had to change everything. The nurse Mike, who by-the-way was the best, told me to pick you up. I said "what? what do you mean? how? I don't know how? just pick you up?" I was so nervous. You were my fragile little baby! I didn't want to hurt you or make anything worse. He told me to just put my hands under your head and butt and just pick you straight up. This was the first time I got to hold you. You looked right into my eyes. I'll never forget it. It was like you knew exactly who I was, your mommy had you. It was only for a minute but it was the most precious minute of my life.

6/14/10

They took out your artery line in your head and your belly button. This means we got to hold you! You were still hooked up to lots of cords which we soon became Pros at moving around. They gave you to me, of course I cried. I'd been waiting for this moment for 4 days. I could have sat with you in my arms for days but Daddy wanted a turn too. He held you and so did Grandma. They started feeding you breast milk through a feeding tube today too. So many improvements in one day, it was a perfect day.

6/15/10

The wrap lady came in today and showed me how to do compression wraps on you. There is a silver stocking that went between your leg and the wraps themselves. This stocking has a antimicrobial ingredient in it so it decreases the chances of infection. The wraps have to be applied very gently so not to rupture any of the blebs. I caught on right away so I took the responsibility of changing them myself each day. I had the nurse put a note on your bed that says "My mom will change my dressings each day so please don't touch them! Thank You - Jackson". I know I'm a little controlling but hey, no one else knew how to do it right except me! Your condition is so rare that a lot of the Drs, nurses and medical students want to see your legs unwrapped. Everyday I would set up a time and everyone would come in at once and watch me up-wrap and re-wrap your legs. I'm ok with everyone wanting to see you. The way I look at it, its one more person that knows what KT is so they can help someone else in the future.

You had a lot of visitors today. Mimi, Uncle Caleb &Sam, and Auntie D came to see you. Mimi and Auntie D got to hold you. You are a very loved little boy.

6/16/10

Today it was just you, me and Grandma. I wanted some alone time with you since I could hold you know. Daddy had to go back to work. They let us get you in and out of your bed by ourselves so we held you all day. Grandma tried to take you from me whenever she could, I didn't want to give you up. Mimi bought you some book  so we both read to you. They let me try to feed you with a bottle today. I was really nervous. They gave me a bottle with 10ml of breast milk in it. You drank 2mls and fell back asleep. Still this was really good for a baby your age! The nurses decorated your bottle with your name and ribbons on it.

6/17/10

Today Grandma and I went to see you. I keep saying when 'went' to see you. Let me say that I was there everyday since I was let out of the hospital. We had a room in the Ronald McDonald house across the street. Every morning we would wake up and head to the hospital and wouldn't leave again until 7pm at night. The only time I did leave you is to pump more milk or eat. Otherwise I sat there with you all day. Just watching you or holding you.

You were getting better and better. The oxygen they are giving you is almost room air so you should be off that soon. They're still trying to figure out why your glucose levels are all over the place. That stinks because it means they are coming in a poking your toe every hour to check it. You hate it. I'm sure I would too!

I got to try and bottle feed you again today. You drank 7mls out of the 12ml they allowed you to have, which is awesome! I caught you smiling after you finished your bottle. Grandma got a picture of it. It might have been gas but I think you were smiling at me because you liked my milk.

6/18/10

We made it over for your rounds this morning with the Drs. They said your progressing like you should be with the bottle feedings. They thought there might have been something not working right with your bowels. They did an ultrasound to check but everything was ok. They were just trying to give you too much too fast. They re-started your feeds, just a little slower this time. Mimi came today and hung out with us. She held you a lot today too. Auntie D and Uncle Dave came to see you too. Auntie D brought you a doggie to keep you company in your bed. Daddy came today after work and stayed the weekend. He bought me a beautiful charm necklace. It had a 'J' on it for Jackson, a birthstone charm for June, and a charm that read 'Faith'. Our Faith is what we've been leaning on.