Since I've blog about Nick I think it's fitting for Christian to have his own story too! :)
I'll start from the very beginning!
I was 15 years old when I had Christian. Yeah, crazy I know! I guess I can say I was a irresponsible teenager with a little too much time on my hands, but if I decided to find something to do, I wouldn't have the very best kiddo in the entire world. I was a good kid. I didn't get myself into the drug or drinking scenes, I was a family person, it's in my blood.
Christan had a normal pregnancy. I had a few problems that landed me in the emergency room a couple times. I had gone to the doctors on December 12th and the doctor said I was starting to dilate. And we would probably be having a New Year's baby! She did a sonogram and it showed him taking practice breaths (that is too cool!). Late afternoon on December 14, 2002 is when my life started to change. I started feeling contractions. He wasn't due until January 12, 2003 so I was a little worried because it wasn't time yet, and the doctor was thinking it'd be at least two more weeks until he made his appearance. Well, as you know my children just don't want to stay in for as long as their supposed to. I don't know what it is about these kids, they just can't wait to meet me! I talked to my doctor and she had me head to the hospital. I was dilated 5 centimeters and in labor. Having the sonogram just a few days ago showing he was taking practice breaths there was no reason to try and stop labor. I was hoping and praying to be one of those women who would have an easy fast birth. I'm not so lucky. His labor was long! Twenty four hours long. But then again I don't have much to compare too. The hours passed. Dilation seemed to stand still. I went some 7 hours stuck at 5 centimeters. They started medications and decided to break my waters. The minute she broke my water it started. I thought the contractions were bad before I was sadly mistaken. I was really set on having a natural birth, I was pretty bummed about having the meds, having my water broke and was going to at least stick with no epidural. Maybe five hours later I just couldn't handle it anymore. It was just too much. My doctor said you really should get the epidural because you're back to slow dilation again. I gave in, it was just too much. I was only draining myself and wouldn't be strong enough to deliver. I am glad I got the epidural. I was able to rest my body. My epidural started to slowly wear off and the nurse checked and I was ten centimeters dilated! Again, I think I'm so sort of super women. I'm going to push this baby with no problems. Wrong. Basically it's like trying to squeeze a watermelon though a key hole. After about 45 minutes, Christian Xavier was born at 2:02 pm on December 15, 2002. Weighing 7lbs 0ozs 22 1/2 inches long. With blonde hair, blue eyes, and screaming. That boy could whale. They placed him on my chest and any and everything in that room was blank. I was focused on Christian. I kissed him and kept him warm, and tried calming him down. He was so messy and I helped them clean him off. Then they whisked him away to be weighed and double checked, remember he's 4 weeks premature. If you remember in my blog about Nicholas all I was concerned about was how much he weighed. With Christian I kept asking for him back! He check out alright he had just a little trouble holding his body temperature, so they wrapped him up tight and I tucked him under my gown. He was just perfect all around. And such a good baby. He really didn't complain much. He didn't mind having a bath, or being changed, he liked to be naked actually. He didn't even cry when they pricked his heel for some blood before we went home!
We stayed at the hospital an extra day because after all he was early. But he definitely didn't act premature at all. He had plenty of visitors and the nurses raved at how wonderful of a baby he was. I was complemented on my age, how I didn't act 15 years old. Told me how they've had 30 year old women come no where close to me. That encouraged me. I had so many people insist I could not make it as a mother. There is just something about the birth of your child that you instantly know what to do. I had been around many of babies before Christian was born, and never knew half the things I knew until he was born. It was like information flooded into my head that very day.
They sent us home after 3 days and it was such a beautiful day. The sun was shinning on this chilly winter day. We had gotten a lot of snow in the time we'd been in the hospital. I remember putting this teeny baby in this huge snow suit. It didn't seem so big when I bought it! We packed our bags and off we went to start our journey as Mother and Son. When I stepped into my living room at home is when fear hit me. I was now alone (other than mom and dad), no nurses or doctors to call on when I need help or have a question.
Christian was a great sleeper, I took off his snow suit and laid him in his bassinet my parents had set up in the living room. While he slept I put all his things away and dirty laundry in the wash. He'd gotten lot's new clothes, toys and the hospital loaded us up with freebies :) I wanted to wake him up so bad, but I kept telling myself to never wake a sleeping baby. You guessed it I picked him up. He woke briefly and fell back to sleep, that boy loved to sleep! He woke up when he was hungry and needed cuddled. He never complained when he had a dirty diaper so we were always checking him. Christian is hands down the best baby I have had. He was and still is so laid back. He was happy to just sit and listen to me talk, loved to hear the hair dryer or sweeper running. Loved to take a bath and still does.
Our first night at home. It's funny how I remember this as if it happened yesterday. I was ready for bed and he was sleeping so I took him to our room and laid him in his crib. He slept a couple hours and woke up ready to eat, of course his days and nights are mixed. I'm paying for thinking how wonderful it is that he sleeps so well! Eventually he fell back to sleep, but the second I laid him in his crib he started to cry until I held him again. I thought oh no! He wants to be held all the time. That wasn't the case at all. He wanted to be on his belly. He wouldn't sleep on his back. I was a bundle of nerves because the hospital kept telling me "back to sleep" to prevent SIDS. So I kept waking every few minutes to listen for breathing and his scratching on the sheets.
He slept through the night at about a month old. Crawled early, walked late. He got his bottom two teeth first and rather his front two teeth he got his fangs. So for Halloween he was a vampire. Who would have thought 8 years ago he'd think vampires were cool and drags me to see the Twilight saga films. Christian is a great kid, a fantastic brother, he has a heart of gold, loves his family and friends, super smart, and handsome. He has a 4th-5th grade reading level and he is in 2nd grade! I'm so proud of him and I can't wait to see what he becomes, because I just know it will be something amazing. My only wish is to be able to go back to the day he was born and relive it even if it's just once. It is the very moment my life began. Oh and I would have taken more pictures :)
Saturday, February 26, 2011
In the arms of an Angel
"An angel in the book of life, wrote down our babies birth, and whispered as she shut the book, too beautiful for earth" ~ Unknown
I wanted to write a blog about my precious Angel Stefanie. It's been almost two years since we lost her and it still feels like just yesterday. I don't think I've ever explained her birth and even though her time spent on earth was short, she impacted many lives.
Anthony and myself wanted (more) children since the minute we started dating. Myself already having a child was ready for another, and Anthony not having a child of his own was eager to start a family. We had decided two years before becoming pregnant with her that we would let God decide if we were ready to take the next step. For two long years we waited for the test to read positive, but it never happened. I was beginning to think something was wrong with one of us, or both.
I moved out of my parents house late October of 2008, it was so hectic. We did not get enough time to plan and nothing went the way it should have. After moving with Anthony I started to feel sick and sore. I blew it off as normal pains and nerves. I missed my period, but that wasn't unusual at all. Then something happened that made me think, take a pregnancy test. I coughed and got this feeling in my lower stomach as if someone stabbed me. If you've ever been pregnant you can relate to this feeling. If you haven't been I was feeling my muscles stretching making room for the baby. Took the test and it was positive! I was overcome with joy and a little worried because we had just decided it was a good idea to wait a little longer. Well, Stefanie had different plans!
I had a normal pregnancy with her. I didn't end up at the hospital for any problems, like I did with Christian a couple times and Nicholas. Christian's pregnancy was scary and as you've read in my post's was Nick's. I can say that her pregnancy was the best, other than she is the only baby who gave me horrible morning sickness on and off through my 32 weeks of being pregnant with her.
At 18 weeks we went for our gender sonogram. The tech was very adamant that she was a boy. She said without a doubt definitely a boy. We had no reason to not believe them. Even the doctor who read the sonogram agreed it was a boy. For months we planned for a Carter, bought all boy clothes, blankets and bedding. At 32 weeks they sent me for another sonogram to make sure "Carter" was growing properly. We went to a different hospital this time because they offered a 3D sonogram. We told the tech all about Carter and how we were happy to being having another boy. She did my sonogram and asked me how set I was for a Carter? I didn't answer and I knew what was coming next. She said I'm almost positive he is a she! Holy cow! What the heck did we get our selves into! She didn't say for sure, but that we should consider bringing some girl clothes to the hospital when I deliver. The next day I called my doctor (as instructed by the hospital after my sonogram) we went over the sonogram and the suppose gender. She said that she wanted me to go back because they had some trouble viewing the stomach, and he was probably in a bad position. She scheduled me for another sonogram in two days. We have our sonogram and Carter was really showing his or her parts! Definitely without a doubt 100% GIRL! Again holy cow! Now we have lot's of exchanging to do and new names it was really over whelming. But I was getting a girl, I could believe it.
The day of May 9th 2009 (two days after finding out it was a girl) was a pretty crappy day. I had been feeling poorly and spent the majority of the day relaxing between the couch and the computer chair. I updated my baby registry, went through some clothes, took pictures of the new girl outfits I had gotten and sent them to my mom. Picked out an outfit for her to wear home. She was due around the 4th of July, and I found a cute lady bug red white and blue dress. Anthony came home from work and we set out to do some more shopping and exchanging boy clothes. My dad asked us to come over for soup and sandwiches. We went to dads after shopping and he realized we should get some more buns for sandwiches. So me and Anthony headed up to shop and save and that's when light contractions hit me. I deemed them as braxton hicks, I had been having them here and there since around 26 weeks. In a matter of about a half hour they went from light contractions to stronger and closer together. I told Anthony I was glad to be having an appointment on Monday to talk to the doctor about these braxton hicks, they had never been this strong. As we were heading back to my dads I started timing my contractions, and feeling my belly to see if it was getting tighter. Contractions were about 8 minutes apart and my stomach was getting tight with each one. I decided to give Dr. Ciocca a call. He told me to head down to the hospital. I asked him it was okay for me to have a sandwich or two because I hadn't had dinner yet, and maybe that is why I'm feeling so crappy. He encouraged me to sit down and have some water and a light meal, if they didn't stop to head to the hospital. I did what he asked and nothing changed, so we headed down. On the drive down I wasn't really worried, I figured it was annoying braxton hicks. The closer we got to the hospital the closer and more painful contractions became. They threw me in a bed and started watching the baby and contractions. I was definitely and dilated two centimeters, I was in earl labor. They gave me some medication to stop the labor, and it did stop. I found it really odd that the nurse kept repositioning the heart monitors. Every time she'd find her, they monitor would read a low heart rate or no rate at all. They brought in two machines and both were reading the same results. She quickly left the room and called the doctor. He got there really quickly and read the results. He pointed out how the babies heart rate has "flat lined" several times, and they know it isn't a faulty machine. Then he said we need to deliver right away. I was concerned about being in a hospital without an NICU and asked if there was any way I'd make it to Pittsburgh, he said I was hoping that was going to be an option, but at this point there isn't enough time. Prepping for surgery was on now. Everyone scattered I called everyone to get down to the hospital now, baby is coming. I didn't mention what was happening. I didn't have time we had to get IV's started and in surgery. They called life flight and asked who our pediatrician would be. At this point I hadn't met the pediatrician who was coming, the one who we were going to go with wasn't apart of this hospital. They gave us a choice and once I heard Dr. Gehorge I didn't think twice. I had my doctor standing over me and another doctor who would be either putting me to sleep or giving me a spinal. He said he wanted me asleep, I said NO! Please, do not put me to sleep. Luckily my OB agreed I should be awake for this. I'm thankful I was because I couldn't imagine waking up to such news. We got into surgery. I kept waiting for a cry. Anthony was next to me, and a lot of time had passed and I said is she out? And he looked down at me and said she's been out for a while. That's when I knew. We'd been in surgery for a long time now, I haven't head a cry, and there was a doctor on speaker phone who asked is the mother awake? They said yes, she said get me off speaker NOW! I started praying harder, crying and begging God to save my little girl. I closed my eyes and prayed, I may have prayed out loud I'm really not sure. Then someone, I'm not really sure who. Held my hand and said Melissa, I'm sorry. We couldn't save her. I'm not sure what happened after that. I really don't remember. I only remember being handed my daughter. I remember when I was in recovery and when Pam walked into the room. I looked at her and said Mom, what do I do? I don't remember what she said. I think she said nothing. We passed her around the room to her family members. All whom have been waiting for her arrival for so long. She was so perfect, someone refereed to her as a baby doll, because she was that perfect. She had a head full of dark black curly hair, Anthony's tan skin, a cute little button nose and my lips. My dad asked what her name was? I looked at Anthony and said Stefanie, Stefanie Nicole. He said yes. My dad picked that name just a few days ago, and we liked it. My dad spent so much time with her. He carried her around just talking. He told her about everything. We all told her things. It was getting late and everyone was ready to head home, it had been too long of a night for everyone. It was time for them to rest, I'm sure they didn't. Anthony and I had asked everyone to give us some time alone with Stefanie. We needed to say goodbye alone. We laid in my bed, cuddled just us three, cried and prayed. I really wanted Christian there, but I didn't want him to remember his sister this way. Her body was cold and her lips were turning colors. He was only five and didn't need to experience this, I pray he never does. Everyone came back in our room and a nurse brought in a dress and some Holy Water and we baptized her. We sent her soul with the Lord and I know she is in the best home anyone could ever give her. I don't believe he took her away from me. She served her purpose in life and ended early, it was time to go home. I know she watches over her brothers and family. I know that some day I will get to hold her again. I'll be able to rock her and kiss her forehead again. I need to serve my purpose in life before I can do that. I want to end this blog with this: Take nothing for granted. Hug and kiss your babies often and always tell them you love them, sneak into their rooms at night and kiss their forehead, cover them up to make sure their warm, and whisper you love them. They hear you. Evey night I do this, and every night I will until they fly my nest. And even then I might break into their homes for one last kiss good night.
Thank you for reading my blog. Now we're the tissues :')
Stefanie weighed 3lbs 15ozs. Was born at 11:08 pm on May 9, 2009. At 32 weeks gestation.
To add. We aren't sure why she passed so suddenly. It is believed that her esophagus didn't form causing her to be unable to swallow any fluids, and flip over causing the cord to wrap around her neck. The came to this because after reading both sonograms they were unable to view her stomach.
I wanted to write a blog about my precious Angel Stefanie. It's been almost two years since we lost her and it still feels like just yesterday. I don't think I've ever explained her birth and even though her time spent on earth was short, she impacted many lives.
Anthony and myself wanted (more) children since the minute we started dating. Myself already having a child was ready for another, and Anthony not having a child of his own was eager to start a family. We had decided two years before becoming pregnant with her that we would let God decide if we were ready to take the next step. For two long years we waited for the test to read positive, but it never happened. I was beginning to think something was wrong with one of us, or both.
I moved out of my parents house late October of 2008, it was so hectic. We did not get enough time to plan and nothing went the way it should have. After moving with Anthony I started to feel sick and sore. I blew it off as normal pains and nerves. I missed my period, but that wasn't unusual at all. Then something happened that made me think, take a pregnancy test. I coughed and got this feeling in my lower stomach as if someone stabbed me. If you've ever been pregnant you can relate to this feeling. If you haven't been I was feeling my muscles stretching making room for the baby. Took the test and it was positive! I was overcome with joy and a little worried because we had just decided it was a good idea to wait a little longer. Well, Stefanie had different plans!
I had a normal pregnancy with her. I didn't end up at the hospital for any problems, like I did with Christian a couple times and Nicholas. Christian's pregnancy was scary and as you've read in my post's was Nick's. I can say that her pregnancy was the best, other than she is the only baby who gave me horrible morning sickness on and off through my 32 weeks of being pregnant with her.
At 18 weeks we went for our gender sonogram. The tech was very adamant that she was a boy. She said without a doubt definitely a boy. We had no reason to not believe them. Even the doctor who read the sonogram agreed it was a boy. For months we planned for a Carter, bought all boy clothes, blankets and bedding. At 32 weeks they sent me for another sonogram to make sure "Carter" was growing properly. We went to a different hospital this time because they offered a 3D sonogram. We told the tech all about Carter and how we were happy to being having another boy. She did my sonogram and asked me how set I was for a Carter? I didn't answer and I knew what was coming next. She said I'm almost positive he is a she! Holy cow! What the heck did we get our selves into! She didn't say for sure, but that we should consider bringing some girl clothes to the hospital when I deliver. The next day I called my doctor (as instructed by the hospital after my sonogram) we went over the sonogram and the suppose gender. She said that she wanted me to go back because they had some trouble viewing the stomach, and he was probably in a bad position. She scheduled me for another sonogram in two days. We have our sonogram and Carter was really showing his or her parts! Definitely without a doubt 100% GIRL! Again holy cow! Now we have lot's of exchanging to do and new names it was really over whelming. But I was getting a girl, I could believe it.
The day of May 9th 2009 (two days after finding out it was a girl) was a pretty crappy day. I had been feeling poorly and spent the majority of the day relaxing between the couch and the computer chair. I updated my baby registry, went through some clothes, took pictures of the new girl outfits I had gotten and sent them to my mom. Picked out an outfit for her to wear home. She was due around the 4th of July, and I found a cute lady bug red white and blue dress. Anthony came home from work and we set out to do some more shopping and exchanging boy clothes. My dad asked us to come over for soup and sandwiches. We went to dads after shopping and he realized we should get some more buns for sandwiches. So me and Anthony headed up to shop and save and that's when light contractions hit me. I deemed them as braxton hicks, I had been having them here and there since around 26 weeks. In a matter of about a half hour they went from light contractions to stronger and closer together. I told Anthony I was glad to be having an appointment on Monday to talk to the doctor about these braxton hicks, they had never been this strong. As we were heading back to my dads I started timing my contractions, and feeling my belly to see if it was getting tighter. Contractions were about 8 minutes apart and my stomach was getting tight with each one. I decided to give Dr. Ciocca a call. He told me to head down to the hospital. I asked him it was okay for me to have a sandwich or two because I hadn't had dinner yet, and maybe that is why I'm feeling so crappy. He encouraged me to sit down and have some water and a light meal, if they didn't stop to head to the hospital. I did what he asked and nothing changed, so we headed down. On the drive down I wasn't really worried, I figured it was annoying braxton hicks. The closer we got to the hospital the closer and more painful contractions became. They threw me in a bed and started watching the baby and contractions. I was definitely and dilated two centimeters, I was in earl labor. They gave me some medication to stop the labor, and it did stop. I found it really odd that the nurse kept repositioning the heart monitors. Every time she'd find her, they monitor would read a low heart rate or no rate at all. They brought in two machines and both were reading the same results. She quickly left the room and called the doctor. He got there really quickly and read the results. He pointed out how the babies heart rate has "flat lined" several times, and they know it isn't a faulty machine. Then he said we need to deliver right away. I was concerned about being in a hospital without an NICU and asked if there was any way I'd make it to Pittsburgh, he said I was hoping that was going to be an option, but at this point there isn't enough time. Prepping for surgery was on now. Everyone scattered I called everyone to get down to the hospital now, baby is coming. I didn't mention what was happening. I didn't have time we had to get IV's started and in surgery. They called life flight and asked who our pediatrician would be. At this point I hadn't met the pediatrician who was coming, the one who we were going to go with wasn't apart of this hospital. They gave us a choice and once I heard Dr. Gehorge I didn't think twice. I had my doctor standing over me and another doctor who would be either putting me to sleep or giving me a spinal. He said he wanted me asleep, I said NO! Please, do not put me to sleep. Luckily my OB agreed I should be awake for this. I'm thankful I was because I couldn't imagine waking up to such news. We got into surgery. I kept waiting for a cry. Anthony was next to me, and a lot of time had passed and I said is she out? And he looked down at me and said she's been out for a while. That's when I knew. We'd been in surgery for a long time now, I haven't head a cry, and there was a doctor on speaker phone who asked is the mother awake? They said yes, she said get me off speaker NOW! I started praying harder, crying and begging God to save my little girl. I closed my eyes and prayed, I may have prayed out loud I'm really not sure. Then someone, I'm not really sure who. Held my hand and said Melissa, I'm sorry. We couldn't save her. I'm not sure what happened after that. I really don't remember. I only remember being handed my daughter. I remember when I was in recovery and when Pam walked into the room. I looked at her and said Mom, what do I do? I don't remember what she said. I think she said nothing. We passed her around the room to her family members. All whom have been waiting for her arrival for so long. She was so perfect, someone refereed to her as a baby doll, because she was that perfect. She had a head full of dark black curly hair, Anthony's tan skin, a cute little button nose and my lips. My dad asked what her name was? I looked at Anthony and said Stefanie, Stefanie Nicole. He said yes. My dad picked that name just a few days ago, and we liked it. My dad spent so much time with her. He carried her around just talking. He told her about everything. We all told her things. It was getting late and everyone was ready to head home, it had been too long of a night for everyone. It was time for them to rest, I'm sure they didn't. Anthony and I had asked everyone to give us some time alone with Stefanie. We needed to say goodbye alone. We laid in my bed, cuddled just us three, cried and prayed. I really wanted Christian there, but I didn't want him to remember his sister this way. Her body was cold and her lips were turning colors. He was only five and didn't need to experience this, I pray he never does. Everyone came back in our room and a nurse brought in a dress and some Holy Water and we baptized her. We sent her soul with the Lord and I know she is in the best home anyone could ever give her. I don't believe he took her away from me. She served her purpose in life and ended early, it was time to go home. I know she watches over her brothers and family. I know that some day I will get to hold her again. I'll be able to rock her and kiss her forehead again. I need to serve my purpose in life before I can do that. I want to end this blog with this: Take nothing for granted. Hug and kiss your babies often and always tell them you love them, sneak into their rooms at night and kiss their forehead, cover them up to make sure their warm, and whisper you love them. They hear you. Evey night I do this, and every night I will until they fly my nest. And even then I might break into their homes for one last kiss good night.
Thank you for reading my blog. Now we're the tissues :')
Stefanie weighed 3lbs 15ozs. Was born at 11:08 pm on May 9, 2009. At 32 weeks gestation.
To add. We aren't sure why she passed so suddenly. It is believed that her esophagus didn't form causing her to be unable to swallow any fluids, and flip over causing the cord to wrap around her neck. The came to this because after reading both sonograms they were unable to view her stomach.
Monday, February 21, 2011
Famous lines!
January 2011
I find that when I tell people about Nick's brittle bone disease I get asked the same questions. They are as follows:
Will he grow out of it? Sadly no he won't grow out of it. OI is a genetic disease meaning he has genes in his gene pool that have mutated. This something that happened probably at the second of conception. Nothing anyone could have done to prevent it.
What do they do for that? We have to be really careful, teach him to be really careful. Physical therapy. You get the idea.
Does he get enough calcium? Actually, calcium has nothing to do with it. It's collagen that his body lacks. The link will better describe.
http://en.wikipedia.org/wiki/Osteogenesis_imperfecta
I find that when I tell people about Nick's brittle bone disease I get asked the same questions. They are as follows:
Will he grow out of it? Sadly no he won't grow out of it. OI is a genetic disease meaning he has genes in his gene pool that have mutated. This something that happened probably at the second of conception. Nothing anyone could have done to prevent it.
What do they do for that? We have to be really careful, teach him to be really careful. Physical therapy. You get the idea.
Does he get enough calcium? Actually, calcium has nothing to do with it. It's collagen that his body lacks. The link will better describe.
http://en.wikipedia.org/wiki/Osteogenesis_imperfecta
One day at a time!
Want to add that this blog is happening backwards until I can write up to the present day.
November 2010
Now that we know what is going on with Nicholas it was time to start figuring out how to treat him. There is no cure for brittle bone disease, but there are things we can do to prevent breaks and give him pain management. I mentioned medications in my last post and careful handling. I'll explain how we do some things for Nicholas.
First and foremost, we never ever pull or push on his arms. Which make changing diapers nearly impossible, especially poppie ones. Most people lift baby up by their ankles to slide a clean diaper under their butts, as well as wiping (normal babies break too!). We roll Nick onto his side to wipe him. This was when he was 3 months old, he is now 7 months old and loves to eat his feet so he pretty much lifts himself. Which has made diaper changes so much better! We encourage him to "eat" his toes to make it easier. But sometimes he can be so stubborn and we have to go back to rolling to his side. This is usually in the middle of the night or early morning when he wants to eat and not be bothered with being changed. Well Mr. Nicholas I don't want to be doing this at 3:00 in the morning either so let's do each other a favor and get it over as quickly as possible! I tell him this all the time, he never listens :-p
Changing and putting clothes on. UGH! That's a job! When he was 3 months old it was simple. Rule of thumb don't pull his arms through don't force them though.
Picking him up was really difficult for a while because I was so scared I'd put too much pressure on his clavicle or his ribs. But to my surprise we made it pretty easy to wrap our hands and fingers away from those areas and have a good hold on him.
I'm often reminded he isn't made of paper. My response to that is. What is wrong with being just a little extra cautious? Nothing in my opinion. If we can be really careful we can prevent breaks! It's what I've been stressing for months. He may not be as "bad", but should we really be chancing that? If we're going to have another break I want him to be old enough to talk and be able to explain how it happened. I cannot and will not go though the pain and torture we went though while finding out.
December 2, 2010
We head to Children's hospital to see a Genetic doctor. They diagnose Nick with type one OI. We're some what relieved to find out it's type one, because some of the other types are really bad. We go over medications, physical therapy and any questions we had. They were happy to see how we made our own little routine for changing, dressing and handling Nicholas. Basically we're doing exactly what we should be. He could start physical therapy when he gets a little older, and we could do some water therapy at home. Which we started doing at around 5 months when he was able to hold up his own head. They gave us a note to carry around in our bags explaining that Nicholas has OI and could fracture. I made several copies and keep them in every single bag I take with me. Purse, wallet, diaper bag, car and a copy at my parents. I will never risk children and youth services in our lives again. While we're there we went over both Anthony and myself family history. I have never broken a bone and Anthony has broken several. If you have ever noticed Nicholas' eyes you'll see that around the pupil is blueish gray instead of white. That is a sign of brittle bone disease. Well Anthony's eyes have the same color, Anthony's is much lighter. With Anthony's break history and the color in his eyes they felt very strongly that he has OI. That wasn't a shock because we almost expected it because of his break history. Brittle bone disease is genetic and Anthony is likely the carrier. We are still awaiting results.
Rest of 2010.
Christian's 8th birthday, Christmas, New years. The year ended well. The boys had a great Christmas and we brought in the New Year in style. Twenty eleven is a new beginning for us.
"Soon you will walk into the sunset as if nothing has ever happened" quote from Pam. I think about it all the time. It got me though those hard days when we weren't sure if we'd have a family tomorrow. And we are walking into the sunset as if nothing has ever happened. As time has gone on I go some days without even thinking about that horrible moment in our lives. I'm getting over it, I'm not scared that every knock at the door is the caseworker. We take it "one day at a time" another Pam quote.
November 2010
Now that we know what is going on with Nicholas it was time to start figuring out how to treat him. There is no cure for brittle bone disease, but there are things we can do to prevent breaks and give him pain management. I mentioned medications in my last post and careful handling. I'll explain how we do some things for Nicholas.
First and foremost, we never ever pull or push on his arms. Which make changing diapers nearly impossible, especially poppie ones. Most people lift baby up by their ankles to slide a clean diaper under their butts, as well as wiping (normal babies break too!). We roll Nick onto his side to wipe him. This was when he was 3 months old, he is now 7 months old and loves to eat his feet so he pretty much lifts himself. Which has made diaper changes so much better! We encourage him to "eat" his toes to make it easier. But sometimes he can be so stubborn and we have to go back to rolling to his side. This is usually in the middle of the night or early morning when he wants to eat and not be bothered with being changed. Well Mr. Nicholas I don't want to be doing this at 3:00 in the morning either so let's do each other a favor and get it over as quickly as possible! I tell him this all the time, he never listens :-p
Changing and putting clothes on. UGH! That's a job! When he was 3 months old it was simple. Rule of thumb don't pull his arms through don't force them though.
Picking him up was really difficult for a while because I was so scared I'd put too much pressure on his clavicle or his ribs. But to my surprise we made it pretty easy to wrap our hands and fingers away from those areas and have a good hold on him.
I'm often reminded he isn't made of paper. My response to that is. What is wrong with being just a little extra cautious? Nothing in my opinion. If we can be really careful we can prevent breaks! It's what I've been stressing for months. He may not be as "bad", but should we really be chancing that? If we're going to have another break I want him to be old enough to talk and be able to explain how it happened. I cannot and will not go though the pain and torture we went though while finding out.
December 2, 2010
We head to Children's hospital to see a Genetic doctor. They diagnose Nick with type one OI. We're some what relieved to find out it's type one, because some of the other types are really bad. We go over medications, physical therapy and any questions we had. They were happy to see how we made our own little routine for changing, dressing and handling Nicholas. Basically we're doing exactly what we should be. He could start physical therapy when he gets a little older, and we could do some water therapy at home. Which we started doing at around 5 months when he was able to hold up his own head. They gave us a note to carry around in our bags explaining that Nicholas has OI and could fracture. I made several copies and keep them in every single bag I take with me. Purse, wallet, diaper bag, car and a copy at my parents. I will never risk children and youth services in our lives again. While we're there we went over both Anthony and myself family history. I have never broken a bone and Anthony has broken several. If you have ever noticed Nicholas' eyes you'll see that around the pupil is blueish gray instead of white. That is a sign of brittle bone disease. Well Anthony's eyes have the same color, Anthony's is much lighter. With Anthony's break history and the color in his eyes they felt very strongly that he has OI. That wasn't a shock because we almost expected it because of his break history. Brittle bone disease is genetic and Anthony is likely the carrier. We are still awaiting results.
Rest of 2010.
Christian's 8th birthday, Christmas, New years. The year ended well. The boys had a great Christmas and we brought in the New Year in style. Twenty eleven is a new beginning for us.
"Soon you will walk into the sunset as if nothing has ever happened" quote from Pam. I think about it all the time. It got me though those hard days when we weren't sure if we'd have a family tomorrow. And we are walking into the sunset as if nothing has ever happened. As time has gone on I go some days without even thinking about that horrible moment in our lives. I'm getting over it, I'm not scared that every knock at the door is the caseworker. We take it "one day at a time" another Pam quote.
Friday, February 11, 2011
The untold story
Everything still normal. Baby Nicholas still colic (we thought). Christian was back to school and Anthony had taken a week vacation from work.
October 7, 2010
I woke up to a screaming baby. This wasn't his normal I'm hungry cry, he was in pain of some sort. I tried some gas meds and a little Tylenol. Eventually he fell back to sleep, but was waking every half hour or so. What a long night! Morning came and Nick seemed to be in a much better mood. Got Christian ready and off to school. That is when I realized something is wrong with Nicholas. He wasn't lifting his left arm, and when I lifted it he was screaming. I called on Anthony and showed him what was happening. He didn't think anything was wrong, and said maybe he's stiff? I didn't like the looks of it. His collar bone was swollen and pinkish. I decided to give a call to the doctor. They said bring him in an hour. They decided to go ahead with his appointment he had for next week that day, so he got some shots while we were there. The doctor was as concerned as we were. And suggested we have an x-ray taken. He told me to not worry. Our pediatrician is fantastic and knows us very well, and knows we're worry warts. He said you can go to Ellwood since Nick was delivered there. We also wanted to grab lunch at Vinny's, so we headed down.
Took the x-rays and they said it would take about an hour and had us wait. We waited and a nurse came back and told me Nicholas had a fractured clavicle (collar bone)! We were flabbergasted! They wanted us to go into the emergency room. Went in and a few minutes later a very arrogant doctor walked in. He explained what the x-rays were showing. Not only did Nicholas have a fractured clavicle, but his femurs and humerus look as if they were previously fractured. I remember looking at him saying oh my God. Then he said. I will have to file a report with children and youth services, a two and a half month old baby cannot break his bones on his own. Obviously a two and a half month old baby cannot, but there is no way someone is hurting this child. He thought differently. He was very rude from the beginning. Asked me very silly questions. Nicholas has always had reddish eyelids and the veins in his cheeks show. He wanted to know how that happened? It didn't happen, it's always been that way. Nick was also born with a muscle deformed in his bottom lip. When he cries one side droops and the other doesn't. He wanted to know how that happened? Well, your the medical professional shouldn't you know what that is? Anyhow, I'm panicking now. I called my other mum and dad. She came down right away. At this point CYS had already been there questioning us. They even agreed that there was no way Nick was being abused. Nick's doctor came in and he said no signs of abuse. Their office was just flabbergasted as well. I had enough of these accusations and said I want a second opinion. Again with the arrogant doctor he told me that I could not have a second opinion and x-rays don't lie. I said but you do! I'm leaving! Where do you think your going to take him? I said Children's hospital. CYS agreed that was a good idea, but Nick could not come home with us! WHAT?!?! He had to go home with Pam (other mum). They made a gentlemen agreement and we left. It was late that night and we all agreed to go in the morning.
10-8-2010
We make arrangements for someone to get Christian from school drop and head straight to Pittsburgh. Mum came along she just had to, I couldn't handle it alone. She is very strong and doesn't take much bull crap! We got there and explained what was happening. The first thing the attending doctor noticed was the color of Nicholas' eyes. What is supposed to be white around the pupils are grayish blue. A sign of a rare disease called Osteogenesis imprefecta or brittle bone disease. They run Nick though a series of tests including cat scans and several x-rays. Cat scan was completely clear ruling out shaken baby syndrome (duh I could have told them that). X-rays showed fractures in the clavicle possible fractures of the humerus and femurs. They wanted to take a DNA sample to test him for Osteogenesis imprefecta, except it will take four to six weeks to return.
10-12-2010
Nick still with Pam. We're all torn apart. There is just no way someone is hurting this baby. Something is seriously wrong. We have an answer to why he was always crying, his bones hurt. He has the signs of OI. We just have to pray the science is in our favor. We scheduled a meeting with the CYS caseworker. We wanted Nicholas home. If anyone has ever dealt with CYS you will know that they are never truthful and always misleading. They tell you what you want to hear. We learned quickly to never believe them. Back to our meeting. The caseworker came with her 'supervisor' in tow. And a police detective!!!! Oh my god! They wanted to speak to Anthony and myself, mainly Anthony. They viewed him as a loose cannon because he blew up on a caseworker, how couldn't he? He was being accused! At this point we had done so much research on OI and another condition called Temporary brittle bone disease. We spoke to the detective with Pam for a few minutes. Explaining our findings and what we believe is going on. He insulted my cousin by asking her what her medical back ground was? She said nothing, but the internet. So he called her a medical expert wannabe! That is so not the case! We aren't wannabe's we're trying to figure out what is wrong with our baby! We spoke to the detective agreed to take the polygraph tests. Not too soon later there was a knock at the door. It was the CYS caseworker another supervisor and a state police officer. With an order to place Nicholas in protective custody. I fell to the ground I said this cannot be happening. I ran to Nick I wanted to hide with him. The caseworker said 'Melissa don't make me arrest you, hand him over' I didn't. The police officer took his cuffs out and said please don't make me do this. I handed him over. She didn't care when the last time he ate was, what he ate, what he could be allergic to, or did she care that he was fragile. They ran out and I lost it. I screamed laying on the floor, I wanted to be dead. But I had to fight for my rights and my son's rights. I called our close friend who happens to be a lawyer. We were to be in court in 72 hours. We ran to Christians school. I had to protect him at all costs. I had a feeling they were heading after him next. Thankfully they weren't. They left him alone during the whole process, thank God. He is my rock!
10-14-2010
The morning of our hearing to decided where Nick will go. Home with us or with family. Our lawyer went in and came out a few minutes later and told us. They would drop all the charges IF we agreed to take parenting classes (WHAT) and Antony have a mental health evaluation. This isn't a laughing matter at this point, but everyone had to chuckle at these ridiculous orders. The teacher told me I could teach the class! And when Anthony went for his 'evaluation' they asked him why he was there, he did not need an evaluation! CYS was not happy to hear this! Back to the court hearing. After a few weeks of classes Nick could come home and it's over. Except they wouldn't allow him with Pam. They did not like her since she stood up for her family. But since our lawyer is a great friend of our family he and his wife said they'd take him, and allowed me to stay with Nick every night.
The weeks pass. CYS doesn't trust our lawyer anymore, and said they will decide when Nick can return home. And just to put a damper on us they make us wait for test results.
11-8-2010
Four weeks pass. We have had enough. We're appealing! Back to court again. This time we won! Nick was sent home with us!
11- 15-2010
A week later the DNA test results came back. Nicholas tested positive for OI (brittle bone disease) he had a mutation in two genes. He was diagnosed with OI type one. The science proved our innocence. The case was dropped and closed. There was nothing more they could do. This disease causes bones to be brittle and break easily. Some people sneeze and fracture a rib.
This is the first time I have let this story out. Only few people knew. I want to write about my ordeal for people who are battling with children and youth services. This happens to so many families with OI. It's very common. Sadly we have to go through this to find out. It was the second most horrible thing to happen in my life. I thank the Lord daily for my family. He got me though the most of it, the power of prayer is amazing! As for how we handle Nick's brittle bones. Obviously being very careful and seeing the proper doctors is what he needs. We hope to start him on a medication called pamidroate. It will be used to make his bones stronger and to provide pain relief. I will continue to write more blogs about my family like I promised. Thank you for reading.
October 7, 2010
I woke up to a screaming baby. This wasn't his normal I'm hungry cry, he was in pain of some sort. I tried some gas meds and a little Tylenol. Eventually he fell back to sleep, but was waking every half hour or so. What a long night! Morning came and Nick seemed to be in a much better mood. Got Christian ready and off to school. That is when I realized something is wrong with Nicholas. He wasn't lifting his left arm, and when I lifted it he was screaming. I called on Anthony and showed him what was happening. He didn't think anything was wrong, and said maybe he's stiff? I didn't like the looks of it. His collar bone was swollen and pinkish. I decided to give a call to the doctor. They said bring him in an hour. They decided to go ahead with his appointment he had for next week that day, so he got some shots while we were there. The doctor was as concerned as we were. And suggested we have an x-ray taken. He told me to not worry. Our pediatrician is fantastic and knows us very well, and knows we're worry warts. He said you can go to Ellwood since Nick was delivered there. We also wanted to grab lunch at Vinny's, so we headed down.
Took the x-rays and they said it would take about an hour and had us wait. We waited and a nurse came back and told me Nicholas had a fractured clavicle (collar bone)! We were flabbergasted! They wanted us to go into the emergency room. Went in and a few minutes later a very arrogant doctor walked in. He explained what the x-rays were showing. Not only did Nicholas have a fractured clavicle, but his femurs and humerus look as if they were previously fractured. I remember looking at him saying oh my God. Then he said. I will have to file a report with children and youth services, a two and a half month old baby cannot break his bones on his own. Obviously a two and a half month old baby cannot, but there is no way someone is hurting this child. He thought differently. He was very rude from the beginning. Asked me very silly questions. Nicholas has always had reddish eyelids and the veins in his cheeks show. He wanted to know how that happened? It didn't happen, it's always been that way. Nick was also born with a muscle deformed in his bottom lip. When he cries one side droops and the other doesn't. He wanted to know how that happened? Well, your the medical professional shouldn't you know what that is? Anyhow, I'm panicking now. I called my other mum and dad. She came down right away. At this point CYS had already been there questioning us. They even agreed that there was no way Nick was being abused. Nick's doctor came in and he said no signs of abuse. Their office was just flabbergasted as well. I had enough of these accusations and said I want a second opinion. Again with the arrogant doctor he told me that I could not have a second opinion and x-rays don't lie. I said but you do! I'm leaving! Where do you think your going to take him? I said Children's hospital. CYS agreed that was a good idea, but Nick could not come home with us! WHAT?!?! He had to go home with Pam (other mum). They made a gentlemen agreement and we left. It was late that night and we all agreed to go in the morning.
10-8-2010
We make arrangements for someone to get Christian from school drop and head straight to Pittsburgh. Mum came along she just had to, I couldn't handle it alone. She is very strong and doesn't take much bull crap! We got there and explained what was happening. The first thing the attending doctor noticed was the color of Nicholas' eyes. What is supposed to be white around the pupils are grayish blue. A sign of a rare disease called Osteogenesis imprefecta or brittle bone disease. They run Nick though a series of tests including cat scans and several x-rays. Cat scan was completely clear ruling out shaken baby syndrome (duh I could have told them that). X-rays showed fractures in the clavicle possible fractures of the humerus and femurs. They wanted to take a DNA sample to test him for Osteogenesis imprefecta, except it will take four to six weeks to return.
10-12-2010
Nick still with Pam. We're all torn apart. There is just no way someone is hurting this baby. Something is seriously wrong. We have an answer to why he was always crying, his bones hurt. He has the signs of OI. We just have to pray the science is in our favor. We scheduled a meeting with the CYS caseworker. We wanted Nicholas home. If anyone has ever dealt with CYS you will know that they are never truthful and always misleading. They tell you what you want to hear. We learned quickly to never believe them. Back to our meeting. The caseworker came with her 'supervisor' in tow. And a police detective!!!! Oh my god! They wanted to speak to Anthony and myself, mainly Anthony. They viewed him as a loose cannon because he blew up on a caseworker, how couldn't he? He was being accused! At this point we had done so much research on OI and another condition called Temporary brittle bone disease. We spoke to the detective with Pam for a few minutes. Explaining our findings and what we believe is going on. He insulted my cousin by asking her what her medical back ground was? She said nothing, but the internet. So he called her a medical expert wannabe! That is so not the case! We aren't wannabe's we're trying to figure out what is wrong with our baby! We spoke to the detective agreed to take the polygraph tests. Not too soon later there was a knock at the door. It was the CYS caseworker another supervisor and a state police officer. With an order to place Nicholas in protective custody. I fell to the ground I said this cannot be happening. I ran to Nick I wanted to hide with him. The caseworker said 'Melissa don't make me arrest you, hand him over' I didn't. The police officer took his cuffs out and said please don't make me do this. I handed him over. She didn't care when the last time he ate was, what he ate, what he could be allergic to, or did she care that he was fragile. They ran out and I lost it. I screamed laying on the floor, I wanted to be dead. But I had to fight for my rights and my son's rights. I called our close friend who happens to be a lawyer. We were to be in court in 72 hours. We ran to Christians school. I had to protect him at all costs. I had a feeling they were heading after him next. Thankfully they weren't. They left him alone during the whole process, thank God. He is my rock!
10-14-2010
The morning of our hearing to decided where Nick will go. Home with us or with family. Our lawyer went in and came out a few minutes later and told us. They would drop all the charges IF we agreed to take parenting classes (WHAT) and Antony have a mental health evaluation. This isn't a laughing matter at this point, but everyone had to chuckle at these ridiculous orders. The teacher told me I could teach the class! And when Anthony went for his 'evaluation' they asked him why he was there, he did not need an evaluation! CYS was not happy to hear this! Back to the court hearing. After a few weeks of classes Nick could come home and it's over. Except they wouldn't allow him with Pam. They did not like her since she stood up for her family. But since our lawyer is a great friend of our family he and his wife said they'd take him, and allowed me to stay with Nick every night.
The weeks pass. CYS doesn't trust our lawyer anymore, and said they will decide when Nick can return home. And just to put a damper on us they make us wait for test results.
11-8-2010
Four weeks pass. We have had enough. We're appealing! Back to court again. This time we won! Nick was sent home with us!
11- 15-2010
A week later the DNA test results came back. Nicholas tested positive for OI (brittle bone disease) he had a mutation in two genes. He was diagnosed with OI type one. The science proved our innocence. The case was dropped and closed. There was nothing more they could do. This disease causes bones to be brittle and break easily. Some people sneeze and fracture a rib.
This is the first time I have let this story out. Only few people knew. I want to write about my ordeal for people who are battling with children and youth services. This happens to so many families with OI. It's very common. Sadly we have to go through this to find out. It was the second most horrible thing to happen in my life. I thank the Lord daily for my family. He got me though the most of it, the power of prayer is amazing! As for how we handle Nick's brittle bones. Obviously being very careful and seeing the proper doctors is what he needs. We hope to start him on a medication called pamidroate. It will be used to make his bones stronger and to provide pain relief. I will continue to write more blogs about my family like I promised. Thank you for reading.
Back to normal
As the next few weeks go on we're getting back to our normal lives. Life is pretty hectic with a new baby! But it was amazing to be doing it again. Even though I really missed my sleep. Once Nicholas came home he started growing so fast. It was interesting how he gained so much at home and lost so much at the hospital. He was doing well. We had few alarms and most of the time the alarms were while in our arms, so we knew he was breathing, just shallow. As the weeks go on we notice how cranky Nicholas is. He always seems to be crying. We tried the obvious formula change, and it didn't help. Tried gas medications and they didn't help. We figured he was colic, never in my wildest dreams would I have guessed it was something more serious.
September 2010
We head back to West Penn to have his heart monitor read, and to see if he can leave it behind. We were praying he could, that thing was a pain in the butt! They did a normal check up, height weight, ect. Read his monitor and realized that all his alarms were false! He hadn't been having brady's or apnea anymore! That was awesome! For the first time in almost two months I was able to dress my baby without wires hanging off of him. Everything was normal, or so we thought.
Up next. The untold story.
September 2010
We head back to West Penn to have his heart monitor read, and to see if he can leave it behind. We were praying he could, that thing was a pain in the butt! They did a normal check up, height weight, ect. Read his monitor and realized that all his alarms were false! He hadn't been having brady's or apnea anymore! That was awesome! For the first time in almost two months I was able to dress my baby without wires hanging off of him. Everything was normal, or so we thought.
Up next. The untold story.
We're coming home!
We made it into August still at the hospital. Evey thing seems to be going well the only thing holding him back is weight gain and the occasional brady. He had lost so much weight while there. Some of the preemie outfits were too big. Quick shout out to my other mom and best friend Kylie. Thank you for the preemie clothing!!
9-3-2010
Anyhow, we had been told we would be getting a call from the doctor at some point during that day. To discuss if they wanted to send him home or keep him longer. I had an appointment for myself in the morning and asked my other dad to take me because we only have one vehicle. After the appointment we headed for lunch. Why is it that when your about to eat the phone rings? I look at who is calling and it's the hospital! YES! I've been waiting all morning, finally. The doctor discussed Nick's status and went over the past two weeks, I asked questions and to be honest can't remember what they were. She asked me what I wanted to do? I told her whatever is in the best interest of Nicholas. She told me that he could come home on a heart monitor or spend another month in the hospital. I told her I would discuss what we were going to do with my husband and family and would get back to her in an hour. Anthony wanted him home as soon as possible, I was weird because the heart monitor and words CPR scared me. Mum and dad wanted what was best for baby Nick. We decided to bring him home with the monitor.
9-4-2010
We're coming home! Anthony had to work in the morning and kicked off early. I had texted with my other mum and dad all day, and decided they should come along to relearn CPR and the heart monitor. We needed someone other than Anthony and myself to understand things in case we had an emergency and had to leave Nicholas with someone. Christian wanted to learn CPR (never too young to learn) so he came along as well. My other dad asked if I had ever been to the spaghetti warehouse? We hadn't. He offered to take us to dinner there! We decided we'd go after we left the hospital because we had a scheduled appointment for classes at 3pm. We got there started packing up Nick's room, signed a million papers, and took our class. They explained what beeps meant. There are different sounds for different problems. Basically the machine's beeps is a smoke alarm on steroids! It was so much to take in a short amount of time, and very over whelming. Nick got hooked up to his machine. It was a strap about two inches wide and went around his chest. Two paddles on each nipple, white on the right and black on the left (white is right). Then it plugged into a wire that plugged into the machine. He was set! It was interesting and felt kind of nice to have a wonderful life saving device with all the hype over SIDS.
It was time! Time to place all 4 pounds of baby Nick into his car seat. Oh my goodness I lost him in there! Such a tiny baby in a huge carseat! I had brought along plenty of blankets and his head rest. They wouldn't allow us to use his head rest because they are known to cut of air ways. We gathered our bags took a family picture and off we went. Of course it had to be raining, actually pouring, we were having a nasty thunderstorm.
Most babies go home during their 'home coming' well this little guy went to his first restaurant. The spaghetti warehouse. We covered Nick with blankets to keep people and germs away. Baby Nick was very quite and we enjoyed our supper. After we ate we all headed home. Anthony did not take the highway, so it took us a little longer to get home than usual. My little nanny Christian checked on Nick several times, and would say okay mom he's alright, still sleeping. Felt nice having such a caring boy.
We're almost home when...we get an alarm!!! The monitor was screaming! Pulled over and ran out of the car as if it was on fire! It was nothing but a dead battery, phew. The teacher said the battery should last for eight hours, but it only lasted three. After some time I found out the batteries should last twenty-four hours. Which it did and then some. We had a few nights when I forgot to plug in and was woken up to the 'dead battery' beep.
9-3-2010
Anyhow, we had been told we would be getting a call from the doctor at some point during that day. To discuss if they wanted to send him home or keep him longer. I had an appointment for myself in the morning and asked my other dad to take me because we only have one vehicle. After the appointment we headed for lunch. Why is it that when your about to eat the phone rings? I look at who is calling and it's the hospital! YES! I've been waiting all morning, finally. The doctor discussed Nick's status and went over the past two weeks, I asked questions and to be honest can't remember what they were. She asked me what I wanted to do? I told her whatever is in the best interest of Nicholas. She told me that he could come home on a heart monitor or spend another month in the hospital. I told her I would discuss what we were going to do with my husband and family and would get back to her in an hour. Anthony wanted him home as soon as possible, I was weird because the heart monitor and words CPR scared me. Mum and dad wanted what was best for baby Nick. We decided to bring him home with the monitor.
9-4-2010
We're coming home! Anthony had to work in the morning and kicked off early. I had texted with my other mum and dad all day, and decided they should come along to relearn CPR and the heart monitor. We needed someone other than Anthony and myself to understand things in case we had an emergency and had to leave Nicholas with someone. Christian wanted to learn CPR (never too young to learn) so he came along as well. My other dad asked if I had ever been to the spaghetti warehouse? We hadn't. He offered to take us to dinner there! We decided we'd go after we left the hospital because we had a scheduled appointment for classes at 3pm. We got there started packing up Nick's room, signed a million papers, and took our class. They explained what beeps meant. There are different sounds for different problems. Basically the machine's beeps is a smoke alarm on steroids! It was so much to take in a short amount of time, and very over whelming. Nick got hooked up to his machine. It was a strap about two inches wide and went around his chest. Two paddles on each nipple, white on the right and black on the left (white is right). Then it plugged into a wire that plugged into the machine. He was set! It was interesting and felt kind of nice to have a wonderful life saving device with all the hype over SIDS.
It was time! Time to place all 4 pounds of baby Nick into his car seat. Oh my goodness I lost him in there! Such a tiny baby in a huge carseat! I had brought along plenty of blankets and his head rest. They wouldn't allow us to use his head rest because they are known to cut of air ways. We gathered our bags took a family picture and off we went. Of course it had to be raining, actually pouring, we were having a nasty thunderstorm.
Most babies go home during their 'home coming' well this little guy went to his first restaurant. The spaghetti warehouse. We covered Nick with blankets to keep people and germs away. Baby Nick was very quite and we enjoyed our supper. After we ate we all headed home. Anthony did not take the highway, so it took us a little longer to get home than usual. My little nanny Christian checked on Nick several times, and would say okay mom he's alright, still sleeping. Felt nice having such a caring boy.
We're almost home when...we get an alarm!!! The monitor was screaming! Pulled over and ran out of the car as if it was on fire! It was nothing but a dead battery, phew. The teacher said the battery should last for eight hours, but it only lasted three. After some time I found out the batteries should last twenty-four hours. Which it did and then some. We had a few nights when I forgot to plug in and was woken up to the 'dead battery' beep.
Christian is the BIG brother!
Christian couldn't wait to meet his brother. I knew he'd be a wonderful brother, and he is! He admires Nicholas and Nicholas loves him. So when it came time to bring Christian to the hospital I knew it would be an eventful day, and it was! He wore his I'm the big brother t-shirt proudly. Even though he spilled an entire orange juice box on himself on the drive down. It was a really hot day so he dried pretty quick and got over it. Most people who know Christian well know how his 'melt downs' can be. They're dramatic, but he's being a typical 7 year old. So the thought of having him sit all day in a boring hospital worried me a little. I can't have him causing a scene in the middle of the NICU. We talked about how important it was to be quite because some of the babies there are very sick. He came in and was saddened to see so many babies, some so small, some unable to breath on their own. He had many questions. Can my brother breath? Is he that small? No. Your brother is much bigger and is breathing very well. We scrubbed up and went in. He had such a scared look on his face, after seeing other babies in small boxes I think he was worried of what his baby would look like. Then I introduced them. Christian this is Nicholas, Nicholas this is Christian. I will never forget what Christian said "Hi Nick. I'm your BIG brother Christian. I love you! We're best friends now, I brought you this monkey" Basically the entire NICU staff was in tears over this sweet boy's speech to his baby brother. Chris may have a wild side, but underneath that he has a heart of gold, and his very loving. Then sadness struck. Can I hold him. momma (Chris always calls me momma lol)? I looked at the nurse and she pointed to a sign that said Children under the age of 10 not permitted to hold babies. I had to tell him no. That killed me! He waited so long to hold his baby brother. Well, he couldn't hold him but he could touch him, kiss him and talk to him. The nurses and doctors came in and out today, Christian was sure to introduce himself to everyone, and say I'm not allowed to hold him. Anthony decided to head outside to make a couple phone calls (his phone always rang off the hook while there). Chris stayed with me and Nicky. Then the unthinkable happened. Nick's doctor came into our pod and said let him hold him, but make it quick, shift change is almost over! So we quickly and gently placed Nick in Christian's arms. I held onto him as well as this was his first time holding a baby in a couple years. The first thing Nick did was cry and Chris said he doesn't like me. But I reminded him that he doesn't remember him until you talk to him. So he talked and Nick stopped crying! He shushed him and kissed him. It was only a few minutes but it felt like hours, it was amazing. Again the feeling of joy for having two awesomely great boys.
Next: Nick's home coming. Should be able to do it today since Nick is napping.
Next: Nick's home coming. Should be able to do it today since Nick is napping.
Thursday, February 10, 2011
Craziness!!!
July 2010
We spent every waking moment preparing to head to the hospital at some point during the day. Sometimes early in the morning to very late at night. When Anthony had the day's off we would head to the hospital first thing in the morning. We'd spend the whole day with Nicholas and leave late at night. When he worked the night shift I'd either meet him at work or meet him in Pittsburgh. My wonderful family took time out of their nights to take me to Nick. Even my father would borrow a car from his work to take me to Pittsburgh after a ride had fallen though. My bio-mom had to work that night and took their car before we knew I wouldn't have a way down. My cousins (second mother and father) would take me as well, even though they would get home late, and mum would have to go to work early the next day. We made due though. For the first week I had never felt so tired in my whole life! I've been to Pittsburgh so many times, but every night drive seemed longer than the day before. I had to remind myself that I just given birth via c-section and my body was working in over drive. I needed to slow down! And rest.
For two weeks we drove back and forth everyday. Drained our bank accounts in gas, food and parking money. Every time we thought Nicky was coming home he'd have another bradycardia. When they have these spells they keep them for 7 days until 'brady' free. I swear he'd go 6 days, then have another UGH! But he was in good hands!
He lost a lot of weight while in. Born 4lbs 6ozs and went down to about 3lbs 14ozs. That was a bit scary! He also didn't get he idea to suck, swallow and breath at the same time. So they had to give him a feeding tube. To which Nick pulled out twice! The second time they left it out to see how well he would do on his own, a success! He did great! That's my boy! Gaining weight, eating good, brady's seem to be false at this point!
7/25/2010
Baby shower! My wonderful family and friends threw me a beautiful baby shower! Although most of my guests didn't bother to show up or even call for that matter, it turned out to be a fantastic day! Not only did I have so many people who love me surrounding me showering Nicholas with gifts. I also got a call the Nicholas would be moved from the NICU to the step down unit! YES! One step closer to coming home. Awesome news I must say. But the fact that my guests didn't come to Nick's shower was quite depressing. It hurt me for a while because they said they were coming. Not that I wanted their gift, I wanted to welcome Nick into the world with them. I think the worst part was my biological mother didn't come, actually neither grandmothers came. But we pressed on I had so much love from my other mum, friends Tarah and Kylie, my favorite sister in law Mary and her daughter Jessica. We decided to let the boys stay, after all someone had to eat all the food we made. It was a picture perfect day!
The days go by and we stand by Nicks side. Still recovering from a c-section, totally drained and trying to breastfeed. I needed sleep! So I did! I slept for hours. Christian was off having fun with his big Cousin Mike, and I slept the hours away. Had the phone not rang I would have slept for days on end! Good think someone did call it was 2pm!!! Back into mommy mode! Pump, shower, get dressed, pack clean clothes for Christian and Nicholas and be out the door by 4:30. Seem easy. Not really! I just have to say that I give so much credit to breastfeeding moms! You guys rock! I wish I could say the same for myself. My body has let me down. I had a premature baby and I was not supposed to be breastfeeding yet according to my body. In the beginning I'd produce plenty a week later a drop or two. I tried everything. Eventually I had to hung up the 'hoses' and go with formula. I'm still proud of myself for at least trying. Not proud of the $350 breast pump that is now collecting dust under Nick's crib. Well, there is always the next one...maybe lol.
More blogs to come <3
We spent every waking moment preparing to head to the hospital at some point during the day. Sometimes early in the morning to very late at night. When Anthony had the day's off we would head to the hospital first thing in the morning. We'd spend the whole day with Nicholas and leave late at night. When he worked the night shift I'd either meet him at work or meet him in Pittsburgh. My wonderful family took time out of their nights to take me to Nick. Even my father would borrow a car from his work to take me to Pittsburgh after a ride had fallen though. My bio-mom had to work that night and took their car before we knew I wouldn't have a way down. My cousins (second mother and father) would take me as well, even though they would get home late, and mum would have to go to work early the next day. We made due though. For the first week I had never felt so tired in my whole life! I've been to Pittsburgh so many times, but every night drive seemed longer than the day before. I had to remind myself that I just given birth via c-section and my body was working in over drive. I needed to slow down! And rest.
For two weeks we drove back and forth everyday. Drained our bank accounts in gas, food and parking money. Every time we thought Nicky was coming home he'd have another bradycardia. When they have these spells they keep them for 7 days until 'brady' free. I swear he'd go 6 days, then have another UGH! But he was in good hands!
He lost a lot of weight while in. Born 4lbs 6ozs and went down to about 3lbs 14ozs. That was a bit scary! He also didn't get he idea to suck, swallow and breath at the same time. So they had to give him a feeding tube. To which Nick pulled out twice! The second time they left it out to see how well he would do on his own, a success! He did great! That's my boy! Gaining weight, eating good, brady's seem to be false at this point!
7/25/2010
Baby shower! My wonderful family and friends threw me a beautiful baby shower! Although most of my guests didn't bother to show up or even call for that matter, it turned out to be a fantastic day! Not only did I have so many people who love me surrounding me showering Nicholas with gifts. I also got a call the Nicholas would be moved from the NICU to the step down unit! YES! One step closer to coming home. Awesome news I must say. But the fact that my guests didn't come to Nick's shower was quite depressing. It hurt me for a while because they said they were coming. Not that I wanted their gift, I wanted to welcome Nick into the world with them. I think the worst part was my biological mother didn't come, actually neither grandmothers came. But we pressed on I had so much love from my other mum, friends Tarah and Kylie, my favorite sister in law Mary and her daughter Jessica. We decided to let the boys stay, after all someone had to eat all the food we made. It was a picture perfect day!
The days go by and we stand by Nicks side. Still recovering from a c-section, totally drained and trying to breastfeed. I needed sleep! So I did! I slept for hours. Christian was off having fun with his big Cousin Mike, and I slept the hours away. Had the phone not rang I would have slept for days on end! Good think someone did call it was 2pm!!! Back into mommy mode! Pump, shower, get dressed, pack clean clothes for Christian and Nicholas and be out the door by 4:30. Seem easy. Not really! I just have to say that I give so much credit to breastfeeding moms! You guys rock! I wish I could say the same for myself. My body has let me down. I had a premature baby and I was not supposed to be breastfeeding yet according to my body. In the beginning I'd produce plenty a week later a drop or two. I tried everything. Eventually I had to hung up the 'hoses' and go with formula. I'm still proud of myself for at least trying. Not proud of the $350 breast pump that is now collecting dust under Nick's crib. Well, there is always the next one...maybe lol.
More blogs to come <3
Welcome to the world Nicholas
I started this blog to explain Nicholas' disease. The heart breaking story of what a whole family went through. The 'untold' story. I will try to post daily. I remember some dates of the actual event. Most are likely to be rounded of to the best of my knowledge. Writting is something I enjoy, although I may not be good at it. I like to express my feeling on paper, or in the case a screen. Enjoy!
7/19/2010
I remember it was such a hot day! We spent the day at mum's pool. Since I had been on a modified bed rest because of severe placenta previa swimming was one of the approved things to do. As well as relaxing on the deck getting a tan. I felt something crawling one me. Just as I was about to swat it away I realized it was a baby butterfly! My eyes filled with tears and I smiled, oh did I smile. I shouted LOOK EVERYONE! Stefanie is here!!! Always being told angels were butterfly's I truly believed my daughter was with us. We had many butterfly encounters this past year. Including one in mid-November! (part of another story to come) Anyhow, I was quick enough to snap a picture of her before she flew away. If you're friends with me on facebook it is under my mobile uploads. That day ended pretty well, or did it?
After spending the whole day at the pool it was time to go home and unwind. Anthony had asked me if I wanted a peach tea at Sheetz? Of course I did I lived on them while pregnant. It was still so hot even at 10:30 at night, Christian and I decided to go along with him. Everything was going well, heading home, feeling tired and a bit sore from a little sun burn, had my tea. We talked about baby Nicholas' arrival, he was scheduled to meet us in about three weeks. Boy did he have different plans! I just put Christian down for the night and being 34 weeks pregnant the restroom was my favorite place! Make a quick break before bed. I could hear a trickle and I thought there is no way I am STILL peeing! Before even thinking to grab a piece of toilet paper I reached my hand under myself and when I looked my heart stopped and the first thing I did was scream for Anthony! I was bleeding a lot, not just spotting like I had been for the past 2 months. It was as if someone turned a facet on inside of me. He grabbed my phone and called the doctor. I was so proud of him I was panicking and he was so calm. Doctor told him to get me to the hospital as fast as possible. I grabbed a bath towel from the cupboard, folded it into 4 and stuffed it into my shorts. The hospital where my doctor was is at least a 20 minute drive going the speed limit. Anthony got me there in 8 minutes! I called the most important people my cousin (other mum) and my father. Texted a few people as well (Courtney and Kylie) (Mum had texted me while we were hurdling down Route 65, and I remember saying I'm contracting), it was complete gibberish because my hands were shaking so much, I was petrified! Got to the hospital they were waiting, threw me in a bed and started hooking me up to machines. Baby Nicholas looked great. They attempted to get an IV in me but I had lost so much blood my veins were mush. Remember that towel? It is now soaked with blood, what was once light blue was now bright red. I remember I started to black out. The nurse kept says don't close your eyes, stay with me, look at me. I just wanted to go to sleep. My body went hot, cold, sweating, muffled hearing and blurry vision. After some oxygen and a few slaps on the hands I came back to. Dr. Ciocca had been there and said that was scary for a second. We have to deliver you now. You have either lost too much blood or had an anxiety attack. Either way my poor Dr. Ciocca was delivering yet another one of my premature babies, praying along side of us to let this one live. It was so fast! One minute I'm being stuck 10 times to find a vain for not only medications, and a possible blood transfusion. Wheeled into surgery, a different room I thought. This one was much smaller than the last. The nurse popped her head in and announced that life flight was three minutes away (for baby). I don't remember anything else because I once again passed out for a minute or two.
7/20/2010 12:20am
The next thing I remember was the sound of my Nicholas crying. I cried and cried and said out loud many times Thank You Lord. Thank You. And then only being concerned about how big he was lol. I asked several times, which made everyone laugh. Finally, I head. "mom 4lbs 6ozs doing fantastic, you have a stubborn one!" I said yeah I know. My family stood outside watching and oh and ahing. 'My other dad' stood by the recovery room, arms folded making sure I was okay, such a good dad!
Little Nicholas gave the doctors, nurses and life flight team a run for their money! They tried for a half hour to put an IV in him, he would not stay still. So he headed to Pittsburgh with nothing. He was doing so well he really didn't need it. They waited for me to come out of recovery (longest 45 minutes of my life!) so I could see him, the pilot wanted to get in the air because thick fog was rolling in. We saw Nicky for a few minutes I was able to touch him, while my other mum snapped a million pictures. Nick was on his way. Later that night I got a call from the West Penn NICU Nick was doing great! Required no oxygen. She'd call me in the morning after they check him more.
7/20/2010
What night! Just given birth. Still completely numb from the spinal given a few hours ago, but yet feeling contractions. Oh my goodness they were bad! I said I already had the baby, why are you contracting!!! I was still numb and felt horrible contractions, I can't imagine what they would have been like had I not had the medications still active. I requested another shot of pain medication. Finally fell asleep when the phone started ringing it was my family to congratulate me! I talked to everyone about how beautiful he was. Texted pictures to everyone as well. Then ended the evening with my family.
7/21/2010
I'm going home no matter what you say! Oh, that's right. If doc wasn't going to release me I was going to sign out AMA! My baby was in Pittsburgh and we're loosing precious bonding time. He said okay I'll let you go. But promise me you will not walk through that hospital! We shook on it and he said after lunch you can go. If I could do a cartwheel I would have, but just having a c-section burping hurt! So I said woooo lol. We had a beautiful family lunch, they even provided for Christian. We are a family we all eat together. I stuffed my face as quickly as possible. Grabbed my bags and hit the road! Christian went to play with Tarah, Aiden and Giuls and we headed to Pittsburgh. Luckily we still had Kylie's GPS and didn't get lost. I received a phone call from a nurse in the NICU, just to update me on Nick. I let her know we were in route and would be there in about an hour. She was shocked they let me go and that I was on my way down so soon after a c-section. What shocked me is that she was shocked. Why wouldn't I be on my way? I'm surely not going home to relax while my baby is in the hospital. So, I had to make another promise to not walk through the hospital. I didn't walk I promise!
We made it. Anthony ran through the halls, all while I sat in the wheel chair thinking wow didn't we just go though this death ride a coupe days ago lol. When you get to the NICU you have to be beeped in and then scrubbed up! Scrub for three minutes with an alcohol based soap and very scratchy brushes. Wash come on 3-2-1 THREE MINUTES! There he was. I can't believe it. I'm a mom again. He was just beautiful. So tiny. The nurse said do you want to hold him? Yes, of course. She wrapped him up, put a cap on his head and he made very light cooing sounds. At last. I'm meeting my son for the first time. I was over come with such JOY! I can't believe he is finally here, after losing Stefanie, having a very scary pregnancy and life threatening delivery Nicholas Anthony Moser is here. Such love. A mother to two awesomely perfect boys, can life get any better? Stay tuned to find out!
7/19/2010
I remember it was such a hot day! We spent the day at mum's pool. Since I had been on a modified bed rest because of severe placenta previa swimming was one of the approved things to do. As well as relaxing on the deck getting a tan. I felt something crawling one me. Just as I was about to swat it away I realized it was a baby butterfly! My eyes filled with tears and I smiled, oh did I smile. I shouted LOOK EVERYONE! Stefanie is here!!! Always being told angels were butterfly's I truly believed my daughter was with us. We had many butterfly encounters this past year. Including one in mid-November! (part of another story to come) Anyhow, I was quick enough to snap a picture of her before she flew away. If you're friends with me on facebook it is under my mobile uploads. That day ended pretty well, or did it?
After spending the whole day at the pool it was time to go home and unwind. Anthony had asked me if I wanted a peach tea at Sheetz? Of course I did I lived on them while pregnant. It was still so hot even at 10:30 at night, Christian and I decided to go along with him. Everything was going well, heading home, feeling tired and a bit sore from a little sun burn, had my tea. We talked about baby Nicholas' arrival, he was scheduled to meet us in about three weeks. Boy did he have different plans! I just put Christian down for the night and being 34 weeks pregnant the restroom was my favorite place! Make a quick break before bed. I could hear a trickle and I thought there is no way I am STILL peeing! Before even thinking to grab a piece of toilet paper I reached my hand under myself and when I looked my heart stopped and the first thing I did was scream for Anthony! I was bleeding a lot, not just spotting like I had been for the past 2 months. It was as if someone turned a facet on inside of me. He grabbed my phone and called the doctor. I was so proud of him I was panicking and he was so calm. Doctor told him to get me to the hospital as fast as possible. I grabbed a bath towel from the cupboard, folded it into 4 and stuffed it into my shorts. The hospital where my doctor was is at least a 20 minute drive going the speed limit. Anthony got me there in 8 minutes! I called the most important people my cousin (other mum) and my father. Texted a few people as well (Courtney and Kylie) (Mum had texted me while we were hurdling down Route 65, and I remember saying I'm contracting), it was complete gibberish because my hands were shaking so much, I was petrified! Got to the hospital they were waiting, threw me in a bed and started hooking me up to machines. Baby Nicholas looked great. They attempted to get an IV in me but I had lost so much blood my veins were mush. Remember that towel? It is now soaked with blood, what was once light blue was now bright red. I remember I started to black out. The nurse kept says don't close your eyes, stay with me, look at me. I just wanted to go to sleep. My body went hot, cold, sweating, muffled hearing and blurry vision. After some oxygen and a few slaps on the hands I came back to. Dr. Ciocca had been there and said that was scary for a second. We have to deliver you now. You have either lost too much blood or had an anxiety attack. Either way my poor Dr. Ciocca was delivering yet another one of my premature babies, praying along side of us to let this one live. It was so fast! One minute I'm being stuck 10 times to find a vain for not only medications, and a possible blood transfusion. Wheeled into surgery, a different room I thought. This one was much smaller than the last. The nurse popped her head in and announced that life flight was three minutes away (for baby). I don't remember anything else because I once again passed out for a minute or two.
7/20/2010 12:20am
The next thing I remember was the sound of my Nicholas crying. I cried and cried and said out loud many times Thank You Lord. Thank You. And then only being concerned about how big he was lol. I asked several times, which made everyone laugh. Finally, I head. "mom 4lbs 6ozs doing fantastic, you have a stubborn one!" I said yeah I know. My family stood outside watching and oh and ahing. 'My other dad' stood by the recovery room, arms folded making sure I was okay, such a good dad!
Little Nicholas gave the doctors, nurses and life flight team a run for their money! They tried for a half hour to put an IV in him, he would not stay still. So he headed to Pittsburgh with nothing. He was doing so well he really didn't need it. They waited for me to come out of recovery (longest 45 minutes of my life!) so I could see him, the pilot wanted to get in the air because thick fog was rolling in. We saw Nicky for a few minutes I was able to touch him, while my other mum snapped a million pictures. Nick was on his way. Later that night I got a call from the West Penn NICU Nick was doing great! Required no oxygen. She'd call me in the morning after they check him more.
7/20/2010
What night! Just given birth. Still completely numb from the spinal given a few hours ago, but yet feeling contractions. Oh my goodness they were bad! I said I already had the baby, why are you contracting!!! I was still numb and felt horrible contractions, I can't imagine what they would have been like had I not had the medications still active. I requested another shot of pain medication. Finally fell asleep when the phone started ringing it was my family to congratulate me! I talked to everyone about how beautiful he was. Texted pictures to everyone as well. Then ended the evening with my family.
7/21/2010
I'm going home no matter what you say! Oh, that's right. If doc wasn't going to release me I was going to sign out AMA! My baby was in Pittsburgh and we're loosing precious bonding time. He said okay I'll let you go. But promise me you will not walk through that hospital! We shook on it and he said after lunch you can go. If I could do a cartwheel I would have, but just having a c-section burping hurt! So I said woooo lol. We had a beautiful family lunch, they even provided for Christian. We are a family we all eat together. I stuffed my face as quickly as possible. Grabbed my bags and hit the road! Christian went to play with Tarah, Aiden and Giuls and we headed to Pittsburgh. Luckily we still had Kylie's GPS and didn't get lost. I received a phone call from a nurse in the NICU, just to update me on Nick. I let her know we were in route and would be there in about an hour. She was shocked they let me go and that I was on my way down so soon after a c-section. What shocked me is that she was shocked. Why wouldn't I be on my way? I'm surely not going home to relax while my baby is in the hospital. So, I had to make another promise to not walk through the hospital. I didn't walk I promise!
We made it. Anthony ran through the halls, all while I sat in the wheel chair thinking wow didn't we just go though this death ride a coupe days ago lol. When you get to the NICU you have to be beeped in and then scrubbed up! Scrub for three minutes with an alcohol based soap and very scratchy brushes. Wash come on 3-2-1 THREE MINUTES! There he was. I can't believe it. I'm a mom again. He was just beautiful. So tiny. The nurse said do you want to hold him? Yes, of course. She wrapped him up, put a cap on his head and he made very light cooing sounds. At last. I'm meeting my son for the first time. I was over come with such JOY! I can't believe he is finally here, after losing Stefanie, having a very scary pregnancy and life threatening delivery Nicholas Anthony Moser is here. Such love. A mother to two awesomely perfect boys, can life get any better? Stay tuned to find out!
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