Why Me, Why Us, Why Brody?

I have to be honest…I had a hard time understanding why we were given Brody the way he was, especially in the first week. I mean we had never intended on having another baby at all. We didn’t find out until we were almost 6 months along that we were even pregnant. We barely had time to get things ready for him and then to be dealt the blow that we were…I just had a hard time with it. I questioned God. I wondered what on earth Chuck and I had ever done to deserve this. I started to apologize for every bad thing that I had ever done in my life and promised that from now on I would change and be the best person, mother, wife, friend, daughter that I could possibly be and do only good if he would just take this awful disease away from Brody. One night about 5 days after Brody was born, Chuck and I went out just the two of us for a few hours. We had a long drive and on the way home and Chuck said, “So, do you want to talk about it?” We hadn’t said anything to each other before this…we hadn’t cried in front of each other, we hadn’t talked about the what ifs, nothing. So I started talking to him about the whole why us thing and what did we do wrong? He said he had those same thoughts right after Brody was born and it took him a few days but he decided that we weren’t given Brody in the condition that he was in because we were bad parents or we were being punished for something. God gave us Brody because he knows that we are good parents and we will do everything in our power to make sure Brody gets everything he needs. He mentioned, “Just think of what would happen if he was born into a broken family where there was very little love and very little income of what might happen to him.” And right then and there we both agreed to keep this same outlook…I mean, we really had to if we were going to get through it. What’s done is done, no need to dwell, but learn what we need to do and move on the best that we can. Now, don’t get me wrong, I still have my days…those days where I read about another baby who has died from EB and it makes me so sad and so scared. Those days where I look at his cute little face and realize there is a big chance this is the only skin he’ll ever be able leave unwrapped. Those days where I realize he may have to rely on a wheelchair for most of his mobility. Those days where I look at him and wonder just long he will live. Those nights when bandage changes last for 2-3 hrs and he cries and fights us the ENTIRE time and we’re lucky if we make it through without causing more wounds to him. And yes I’ll even admit I’ve had a time or two where I was feeling very sorry for myself. I remember one time when he was 4 months old I texted a friend of mine and asked, “Is it bad that he’s 4 months old but I want to say it’s ONLY been 4 months since this whole thing happened and I might have to do this every day for the rest of MY life?” How awful for me to think that when it is Brody that this is happening to, not me. But that little guy is just so stinkin cute even if I do start feeling like this, he just melts my heart and I know that he’ll love me no matter what.

Being Home

Getting to come home from the hospital…I was excited and happy. Finally I would have both of my kids under the same roof. Finally Brody would get to use his bedroom. Finally no more hospital. But at the same time, it was stressful as well. No more nurses to help with anything. I was going to be starting up my final plus 30 classes at IUS in 2 weeks and then about 3 weeks after that back to work. Chuck was working nights so I literally didn’t seem him except on the weekends which meant I had to get someone else to help me with the bandage changes, which we were doing every day for the first several weeks after coming home. Developing a routine at the hospital was so easy…no so much once we got home.

I’m not going to lie…Brody was difficult when he was a little baby. It was so hard to find how to comfort him and keep him calm. He cried a lot and did not sleep well for probably the first couple of months we were home, and he just really seemed miserable beyond words. And the spitting up….OH MY WORD! Thankfully, that started to easy up a couple of months ago and he really doesn’t do it much anymore <>. I felt like I was going to another doctor’s appointment every week and then the trips to Cincinnati started. From July to January, we probably made 9 or 10 separate trips, I think 3 of them being 2 day trips and at one point we had to come back 5 weeks in a row! This accounted for me missing all of my allotted days at work before the end of 2011 and has since had to take several days off without pay and will continue to do so until the end of the school year. Hopefully I won’t get fired for missing so many days. EEEK!

Adjusting to having two kids at home was hard enough, but learning to handle Brody and his needs and give Makenna the attention she needs and deserves, well, I’m still learning. And Makenna…what a great big sister and a great little girl. She has acted up on occasion outwardly to me and Chuck, striving for our attention. Once after a bandage change, we came out to chocolate milk powder all over the kitchen floor. But not once has she shone any ill will or resentment towards Brody. She loves him…and he adores her. He smiles at her every time he sees her. I asked her once if she’s always going to protect Brody, especially if people try to make fun of him. She told me yes and that she would beat them up if they tried to.  J

About a month after we came home, we started using different bandaging supplies, which allowed us to do bandages every other day instead of every day. That’s been a godsend because from the time I start getting his new bandages cut and laid out, to unwrapping him, to giving him a bath, to putting the new bandages back on, it takes anywhere from 2-3 hrs, usually closer to 3. I would say that right now bandage changes are more difficult than they ever have been. Brody fights us tooth and the nail the ENTIRE time. Many times all of the fighting causes new blisters to pop up before we are even finished. And boy is he strong. All three of us are just so exhausted after we are finished. I can’t wait for the day that he understands and realizes that if he just holds still and let’s us wrap him, we could be done in an hour or less and without us hurting him more.

Being a parent of a child with EB is most definitely challenging…but so is being the parent of Makenna (for those that know her personally, that’s self explanatory).  J I definitely have a different perspective on life…like I don’t complain about the “small” things quite so much. I do feel my patience with people is shorter than it used to be, but a lot of this is because I hear or see people complaining about those “small” things and it irritates me. I’m getting better at not worrying so much if things around the house go untouched for a day or two. And after 11 years of teaching, I’ve finally learned how to put my family first and my job 2^nd…don’t get me wrong…I still love teaching and put my heart and soul into it, now I put more heart and soul into my family than I did before.

I’ve had so many people tell me how strong of a person I am, how great of a mother I am, etc. I appreciate the compliments but I really do believe that anyone would do what I do for their children if they needed it. I don’t feel any more special than the next person really. It is hard, plain and simple. But to me there wasn’t an alternative. I’m Brody’s mom and he needed me. No one knows exactly what they are capable of doing or handling until they are put into a situation in which you are called upon to find out. People have told me, I don’t think I could do what you do…if it were your child, yes you could.

The NICU

Brody was in the NICU for 27 days. I know so many other babies have to stay a lot longer than that; I’m talking months, but those 27 days lasted FOREVER! Every day, EVERY SINGLE DAY, I got up as early as I could stand it, normally 4 or 5 and tried to do some housework and get myself ready. Then I would wake Makenna up around 7 so I could spend a few hours with her before I left for the hospital. Then I would be at the hospital from around 10 or 10:30AM to 5 or 6PM, go get Makenna and head home for the night. Thank goodness for everyone that brought us meals, gave us money, or gave us gift cards during this time…I don’t know what we would have done. And what an emotional roller coaster ride we were on. Don’t forget…we had never planned on having any more kids and didn’t find out we were pregnant until we were 6 months along. We run around like crazy people for 4 months getting things prepared for a baby that we never intended on having to being given this precious little guy that had so many problems. You know, for the first 2 or 3 weeks we didn't even know if we'd get to bring him home from the hospital because he wouldn't eat well and was fighting off infections. But for a baby that we never intended on having, we sure couldn't wait to get him home.  And you want to know something strange? When Chuck and I finally had our talk about how we were feeling in that first week, we both shared with each other for the first time that when I was pregnant, we had bad feelings about the baby. He said when he was panting the room he thought to himself what if we’re doing all of this work for nothing. And I would walk by his room, especially after it was all decorated and clothes were in the closet and just stare and think, what if something happens to the baby? What if we don’t even get to bring him home? I don’t know if we were just having uneasy feelings because it was such a strange pregnancy or if our internal instincts knew something was up.

Brody started out in an open room in his own closed isolate. After about 6 days he was moved into his own closed off room for infection/bacteria purposes. He was moved to a different part of the NICU the last week he was there because he developed MRSA but stayed in his own room.

It was so hard the first week…I couldn’t do anything but talk and sing to him and I couldn’t do either one of those things without crying. So, I mostly just stared at him and prayed. I was there for all bandage changes during those 27 days. Except for the last 4 days, my job was to try and comfort him through them. On day 6, right after they moved him into his own room, his nurse asked me if I had held him yet. I told her only for a few minutes after he was born but not since then. I told her I had asked but one of the residents said it wasn’t a good idea until they know for sure what was wrong with him…which by the way freaked me out because for a moment I thought I would never get to hold him again. But she just looked at me, wrinkled up her nose as if saying oh what do they know, and said well, I think it’s time to fix that. He had several different tubes and wires connected to him for ivs and such, so finding a way to hold him without hurting all of that was a challenge, but we figured it out. It felt so great to finally hold him! Chuck was jealous because he was at work and missed his chance but the nurse told me that mom’s come first anyways. J

All in all, our stay at the NICU was good. I never got to know any of the 2^nd shift nurses, but we become pretty close to several of the day nurses, as well as other staff members from PT/OT, and speech. There was a short time when we were first home, that I actually missed the hospital. I don’t know why really. The only thing I can think of is that is just became so routine for me…every morning I woke up and knew exactly what was going to happen in my schedule because I did it every day…unless something came up with Brody like an infection, nothing really changed during those 27 days. About 4 days before they were to release Brody, the day after I did my first bandage change, his nurse said to me, “You know. They are thinking of letting him go home on the 19^th.” I looked at her and first had to process that they were even thinking of this and then was trying to figure what that day was and when the 19^th was. I said, “The 19^th? That’s this Sunday….that’s Father’s Day.” She just looked at me and smiled and said I know. He actually stayed an extra day and got to come home on the 20^th. We didn’t tell anyone about it. I told Chuck I didn’t want to in case something happened and he had to stay longer and I didn’t want to have to explain why he wasn’t coming home. So, we made it a surprise, and what a great surprise it was! And as excited and relieved as I was that we were finally going to bring him home, the last thought I had as we started to drive away from hospital was, “Oh gosh…now we have to do this by ourselves.”

The Birth

Makenna was born at 36 weeks so I was pretty terrified that Brody would come early as well and I did not have the extra days at work to take so I was pretty worried about that. But at 38 weeks he still wasn’t here. I had been dilated about 2CM and 40% effaced for the last 2 weeks. Dr. Riely told me she would give me another week and then we could talk about our options. So, at my 39-week appointment she gave me the option of being induced the next day if I wanted. Brody’s due date had always been May 24^th.  Chuck thought that was so awesome because his birthday is March 24^th, his older son’s birthday is January 24^th, and Makenna’s birthday is August 24^th. So, I told Dr. Riely if Brody doesn’t come on his own, then I want to be induced on May 24^th. Besides, I really didn’t have the extra days to take off and I was in the middle of reviewing my kids for their big ECA test at school.

We check in the hospital at 5 on the morning of the 24^th. I had started to feel small contractions already before we even left the house…maybe Brody was going to come on his own anyways. By 7AM the pitocin was started.  A couple of hours after that Dr. Riely came to check on me and broke my water….by 11AM I had my epidural.  All day long I kept updating everyone on facebook or through text messages on what was happening. It was so much fun reading everyone’s comments, “Hurry up and start pushing already.” “I can’t wait to see a picture of him.” “So excited to see the next update.” I loved my nurses that I had…we had good chemistry and were laughing and telling stories. I don’t remember having this experience with Makenna…maybe because she was my first and I was scared to death. Mom brought Makenna over around 1 or 2PM to see me and she had her new Big Sister shirt on and brought up a It’s A Boy balloon. She was so excited. We gave her her big sister present…a unicorn happy napper. She told me she couldn’t wait to see her baby brother through the window and I couldn’t wait for her to experience this…something that never happened. Sometime around 4PM it was time to start pushing. Chuck and I decided it would just be us in the delivery room this time around. I was worried about the pushing…I pushed with Makenna for 3hrs and still had to have an episiotomy and the doctor also had to use the suction cup to get her out (what can I say, she had/has a big head J). A little better with Brody…1.5 hrs, still had to have an episiotomy but no suction cup (thank goodness because I would hate to see what would have happened to his little head). At 5:46PM Brody Mann Curtis was finally born. I didn’t really think about it then, but Dr. Riely didn’t sit him on my chest after he came out like she did Makenna. She took him straight over to the warmer. I remember yelling out, “Does he have all of his toes and fingers?” but no one really said anything.  I told Chuck to go over and get some pictures of Brody. He had seen the discoloration on his arms, legs, hands, and feet but he said he just thought it was part of the afterbirth and stuff. He went over to where Brody was and this is what Dr. Riely said to him, “He has some discoloration on his extremities. I’ve never seen it before and I don’t know what it is. A team from Kosairs is already on their way over and he’ll be transported over there tonight.” She finally brought Brody back over to me wrapped in his blanket with a little hat on his head and told me the same thing. I just stared at him wondering what on earth could this be…most definitely not imagining in my wildest dreams it would be as bad as it was. They take Brody to the nursery to finish getting him cleaned up while the nurses got me cleaned up. The doctor that came over with the transport team came in to talk to us after he examined Brody. He couldn’t tell us anything except he really did not know what it was and they would have to do some research and probably skin biopsies to know for sure. He started doing the research before he even left the hospital to take Brody to Kosairs and said he thought it could be something called Barts Syndrome. He wasn’t completely wrong. Before he left my room to go to the nursery he said the only thing he could tell us at that time is that it looked like Brody had 3^rd degree burns on his skin. As soon as he shut the door I looked at Chuck and just started crying saying do you think I did this to him? I love taking hot baths, and they especially felt good when I was pregnant with Brody after working all day. Chuck just hugged me and said it isn’t anything that either of us did to him.

I go ahead to my room and a friend of my mine waits with me while Chuck goes to Kosairs for a few hours to be with Brody and then comes back around 3AM. I wasn’t expecting to be realeased from the hospital until some time on the 26^th at the earliest, but Dr. Riely came in around 10AM that next morning and said, “I thought about you guys all night. If you promise me that you will take it easy and get as much rest as you can, I will let you leave at 11AM today.”, and from what I heard Dr. Riely doesn’t normally let people check out early for anything. I was so thankful because all I wanted to do was go see Brody. 

When I got to the hospital, we had to put on masks, gloves, hats, and gowns to go in to see him. He was inside a closed incubator with bandages wrapped around his arms, hands, legs, and feet, no clothes on, monitors attached to his chest (this would prove to be very damaging to him) and a small tube coming out of his nose. He was so alert though and so very sweet. We didn’t stay long. By this point it was probably around 1or 2PM, I was tired, needed to go see about renting a breast pump, and I wanted to check on Makenna. So, we left our little guy with the nurses and headed home for the evening not knowing that our world would be completely turned upside down in the coming week.

The Big Announcement and Preparations

From January 2010 to August 2010 my periods were out of whack and all over the place. I put off going to my gyno, well, because you know, it’s the gyno. I knew my annual was coming up in August and I just held on until then. I explained to her what was going on and she suggested I try a different birth control pill to help regulate my periods better. I was to call back in a couple of months and give her an update. So, after 2 months I called back to tell her that I haven’t had a period at all since being on the new pill and she said that some women have experienced this and that I more than likely wouldn’t have one if I haven’t yet. So, I was like YEA FOR ME and never gave it another thought...looking back now, perhaps I should have.  J Several more months go by and over Christmas break I just felt awful. I was really tired and just didn’t feel right. For a split second I thought oh my goodness could I be pregnant but then decided no because I had been religious with my birth control pills, my doctor told me I wouldn’t have anymore periods, I hadn’t gained any weight and in fact I had lost a little, and that just couldn’t be it because we weren’t planning on having anymore. I just chalked it up to doing so much over the holidays and not really resting much. About 2 weeks later I was getting ready for work and was putting make up on and I felt something in my belly. I kind of just stared at myself in the mirror. I knew what that feeling was, I had felt it before 5 years earlier when I was pregnant with Makenna. But no, that’s not possible. It was just some gas bubbles or something. This went on for a week…keep in mind I didn’t tell anyone about this, not even Chuck. I mean, I didn’t know for sure if this was what I was thinking it could be or not, why jump the gun? Plus, after 4 years I had finally gotten Chuck to join the “we’re not going to have anymore kids” bandwagon (I had been a member since shortly after Makenna was born  J). But I knew that if I wasn’t pregnant then something seriously wrong was going on inside of me. So, one night on the way home from a class I stopped and got some of those digital pregnancy tests (I wasn’t going to mess around with deciding if it was one line or two). It was late when I got home so I decided to just zip it up in my purse and deal with it in the morning. I got up kind of early because it had snowed and I wanted to see if we had a snow day. Of course that decision wasn’t made until 6AM. I was already up and there was no way I was going to be able to go back to sleep until I took the test. Within 3 seconds of my pee hitting that thing it showed the word PREGNANT. I just stood there and stared at it and said OH MY GOSH about 10 times behind the closed bathroom door. I decided to go ahead and shower in case we did have school and even if we didn’t I was going to call as soon as my doctor’s office opened and get in to see them. School was canceled at 6AM, I had already been up for 2hrs at this point, going crazy because Chuck is still asleep. He wasn’t supposed to get up until 7:30 but I went ahead and woke him at 7 anyways. Here is how the next 20 minutes went.

ME: Chuck, wake up.

CHUCK: It’s only 7, I have 30 more minutes.

ME: I know, but school is cancelled and I wanted you to get up and talk to me

for a little while before you go to work.

(15 min later)

ME: CHUCK, wake up.

CHUCK: Why do you keep waking me up when I don’t have to get up until

7:30?

ME: Because I want to talk to you.

CHUCK: Is it important?

ME: It. Might. Be. Can you just get up and come in here!?

(Chuck is pretty, well, stupid when he first wakes up…)

ME: Do you want to smoke or get something to drink or something first?

CHUCK: No, I’m okay. Well, let me get some grape juice.

(as he proceeds to take a drink)

ME: I think I’m pregnant.

CHUCK: (sits the juice down slowly) Are you serious?

ME: Yes I’m serious, why would I joke about something like that?

CHUCK: I’m too old for this…I’m too old for this, I’m just too old for this.

(and proceeds to walk to the garage not even looking at me)

(comes back inside)

CHUCK: Well, at least next year we’ll get more back on our taxes.

So, I go to my doctor hoping to get an ultrasound that day but that wasn’t happening. She did say that if I felt like I could feel the baby moving then she could probably hear the heartbeat already so we went to another room to see and sure enough! This was on Thursday, January 20^th and she scheduled me for an ultrasound on Monday, January 24^th. We go to the ultrasound and find out that we were 22 weeks along and having a boy all in the same day! Chuck’s comment was “Boy, this is going to be quick!” You think!? The next 4 months were pretty much a blur trying to get things ready for a baby that we never intended on having. We were literally starting over because we gave away everything that was Makenna’s, and even if we had kept it most of it was pink.

And that’s how this whole crazy pregnancy started…  J

Let's Try This Again

So I’ve decided to give blogging another try. I figure now is as good as time as any to get back into it. A friend of mine commented on one of Brody’s pictures on facebook several months ago, “You should start blogging again. You might be able to help someone that is going through the same thing as you.” I hope that I can. I’m hoping that since we only have about 45 days of school left until summer break, I will be more successful at keeping it up-to-date…for a little while anyways.

I guess I should kind of back track and update things over the last couple of years and before we had Brody since the last time I blogged was January 2010! And let me just apologize ahead of time because this will probably be all over the place trying to remember things.

Well, let’s see…Makenna finished her first year of pre school in the beginnings 3yr old class in May of 2010 and then her second year in the busy bees 4yr old class in May of 2011. She loved every minute of it and did very well. Had the circumstances with Brody been different she would have moved onto to pre k this year but I chose to have her tested to start kindergarten a year early and she satisfied the requirements for that. This has been a blessing for us because all day kindergarten was only like $90 this year compared to $1200 in years passed, it keeps her busy and she has her own life I guess you would say, and she can just ride the bus to and from school which is so great! She has done so very well having completely missed pre k and me not doing what I had intended on doing with her the year leading into kindergarten. All year long she has either tested at or above grade level (a great thing in and of itself but especially since she started a year early). In the beginning she had some issues getting used to the new rules and way of life at school, but she’s adjusted well since then.

In the fall of 2010 she played in her 2^nd season of soccer and I might add her last!  J She just never really got all that interested in it, I had to chase that wild child ALL OVER THE PLACE, and it just wasn’t happening. But that winter she played basketball and did really well with it. She also played tball in the summer of 2011 and did pretty decent with that as well. She played basketball again this winter and just started tball for the 2^nd time in the older age group. I really do feel if she is going to succeed at a sport it will be one of these two if not both. She is just so strong I know once she learns to swing the bat correctly she’ll smack the tar out of the ball. And with basketball, the first time she shot the ball she had perfect form and we didn’t even show her. Now, dribbling on the other hand…that’s another story.

One night in April 2010 I had the biggest scare of my life (well, to that point at least). I had just put Makenna to bed and was doing a little picking up when I heard a loud BOOM in the baby monitor (yes I still use one in her room…do you think she will notice it taped under her bed when she’s 16?). I just stopped and waited and listened and then she started crying. But, I had heard her cry a lot worse and nothing be wrong with her so I wasn’t expecting too much when I went into her room. I opened her door and could see blood shooting out of her head through the dark!!! I flipped her light on only to see this hole in her head (see my facebook for pictures heather hogg curtis). I’m being serious, you could actually see into her forehead. I grab her and stick her in the bathtub, hand her a cloth and tell her to hold it tight to her head. Meanwhile, I call Chuck who was away at guys night (BLAH) and proceeded to shout something similar to this in about 3 seconds: MAKENNA FELL AND HIT HER HEAD AND THERE IS A BIG HOLE IN IT AND YOU NEED TO HURRY UP AND COME HOME I’M TAKING HER TO THE HOSPITAL! <> Then I called my mom to come and go with me. A neighbor said that they saw mom driving about 100mph in a 30! LOL! After the doctor cleaned the wound you could see all the way to her skull YUCK! No stitches required, just some glue and a bandage for a couple of weeks.

As far as Chuck and I go…Chuck and his business partner, well, let’s just say things weren’t working out there, so in the summer of 2010 Chuck left and started working for a small paving and asphalt company for about 6 months and then moved onto a bigger company. I’ve still been teaching full time and in the summer of 2011 I finished my final 2 classes for my plus 30 (and that was after Brody was born)!!! Although I feel like I’m insurance poor and I can’t even tell I got a pay raise from all of the different insurances I have. BLAH! Nothing really exciting going on in our lives (well until January 2011 but that’s another blog)…we did celebrate anniversaries 3 and 4. I can’t believe in 3 months we’ll be celebrating our 5^th one and in September we will have been together for 9 years. PHEW!

My brain is tired and I really can’t think of anything else that happened over the last 2 years regarding just the three of us…if I do, I’ll make a post. I’ll try to make a post soon of pictures over the last couple of years.