..... and I'll cry if I want too? Yes, that's right. I'll cry if I want too. My baby shower is less than a week away, but if you would have asked me last month, I would have said I was not having one. I am proud of myself for how far I have come with everything in the last month, the first month after Dylan's diagnosis of HLHS was horrible for me. Don't get me wrong........ it is STILL horrible, I still wake up every morning with a little tear in my eye wishing this was all just a bad dream and that none of this was really happening ...... but I am finding new strength inside myself, and within others, and finding ways to push forward.
After Dylan's diagnosis, I was angry, I was hurt, I was terrified, I kept blaming myself for him being "sick", and then when I was admitted to the hospital 2 days later due to pre-term contractions and my cervix shortening at only 24 weeks, I had almost no hope in my heart that I was ever going to be able to bring my baby boy home. I wanted to prepare myself for the worst in hopes that it would help ease the pain if I lost him, that meant no longer wanting a baby shower or buying things for Dylan anymore, it was hard looking at the clothes I had already bought him knowing that he may never get to wear them, I didn't want anybody buying him anything and having it at the house and around me if I had to come home from the hospital without my baby, his little kicks and elbow jabs no longer brought a smile to my face, instead it brought tears to my eyes and a pain in my heart ................. this wasn't fair....... I was angry, very angry. Why was this happening to me? To Joe? to my baby boy? I have seen my sister have four amazing little babies, and I was so excited to be having my first baby...... I was excited to be able to hold him close and bond with him and nurse him in the hospital like I've seen my sister do. I was so excited thinking about taking him home a few days later, and having our friends and family over soon after to meet him. I was so excited thinking about the bond that he was going to have with his two older sisters, and all of his little cousins, and the play dates that he would have with my friend Heidi's son since they will only be about two weeks apart...... But on December 6th ( date of diagnosis) , ALL of that changed. I was angry that everything that I knew about what it's like to have a new baby and to bring them home from the hospital was not my reality anymore, all of those things that I was so excited for were no longer options for us. I'm not going to be able to hold Dylan and bond with Dylan in the hospital like I wanted too, I'm not going to be able to bring him home in the newborn outfit that I had already bought for his first trip home, I may never get to nurse him, my friends and family are going to have to wait longer to meet him than I wanted them too, and I think one of the things I was the most angry about is that I am terrified and I don't know what to do....... I was angry that not only do I have to deal with all of the emotions, and the fears about becoming a mother for the first time ever, and not knowing if I'm strong enough to take care of a healthy baby, but now I also have to worry about not knowing how to take care of a "sick" baby. And maybe that's selfish of me to feel that way, but that was the way I felt. I started to become and feel distant from Dylan...... I didn't want to be attached to him anymore, I thought maybe it would be easier for me not to get excited about him and not to make any future plans for him, because I wasn't even sure if he was coming home with us. I thought I was doing the right thing by "preparing for the worst". I was wrong. It didn't make things any easier, it made things worse for me, I was completely depressed and being on bed rest makes it worse. I felt like all I was doing was just waiting around for a couple of more months to have my son, just so he could die. I'm not exactly sure how or when, or why it happened, but I snapped out of it. I guess I just needed my time to grieve and be angry and hurt and selfish. I finally realized that the ONLY way that Dylan was going to be able to fight and have any chance of making it through this, is if I was fighting right along with him. I am his mom after all, and it's my job to teach him how to do things right? How can I expect him to fight for his life if I've already given up? I can't. So here I am, fighting for his life already and bargaining with my body to just let me keep him safe for awhile longer, he's not ready to start his fight yet, he still has a little more strength to gain.... as do I. So keep on kicking, punching, and growing in there little Dylan. Mommy LOVES to feel you move, and I'll be waiting here for you, and be right by your side when its time to fight.
So yes.. I AM having a baby shower, I AM going to celebrate the little miracle I have growing in my tummy, and the fact that he IS coming into this world. Whether we get to have him for a few days, weeks, months, or years, he is still our SON and his life deserves to be celebrated with yummy cake and pizza :) and yes....... I WILL cry at the baby shower,( I've already cried about six times writing this) so friends and family, be warned, some of them will be sad tears, but I know that most of them will be happy tears knowing that I have so many people around me that love me and that love Dylan. <3
Sunday, January 30, 2011
Thursday, January 27, 2011
A change of Heart
Ok....... So I first started this blog at the beginning of this month, and I haven't done anything with it since. At the time that I started it, I wasn't sure if I really wanted to do it honestly. I didn't know if I was ready to talk about my feelings, who I was ready to share them with, or who would really even care. Since my first post, I have come a long way, I'm able to talk to more people about it, I'm able to ask for help from my friends and family, and I'm able to be excited about the little miracle I have growing inside of me right now. Although I am so frightened about everything that is going to happen after Dylan is born, I am so excited to meet our little guy.
Since the first post, I have met with my Perinatologist who is going to be delivering Dylan, Dr. Sean Daneshmand, and he is amazing. He is truly a very caring doctor and good at what he does. I am able to text him and email him with any questions or concerns that I have, and he gets back to me as soon as he can. Since the first post, I have also been back in the hospital for a week, after going to my weekly appointments with Dr. D to check my cervix last week, I was told that my cervix had shortened to 2.0 ........ they worry a little when the measurement is 2.5 ...... and worry even more when its less, so it was back to the hospital for me........ they put me on magnesium to stop the contractions ........ and it worked........ but it was HELL...... for anybody who has not been on magnesium, it's a HORRIBLE HORRIBLE drug, and I would not wish that on anybody. I was on it for two days, and was completely drugged the whole time and sick and miserable....... but i was kindly reminded by the doctors that it doesn't really matter how I feel right now........ Everything is about Dylan, and keeping him inside for as long as we can........ which I know is true...... and I would do anything for my little boy.... but I REALLY hope that I never have to be on magnesium ever every again. They were finally able to ween me off of the Magnesium and get me back on the Nifedipine and I am now back home.... still on strict bed rest.. no getting up except for going to the restroom and for my doctors appointments. My cervix went back up to a 2.6, but I was told that if it ever goes below a 2.0, i'll be back in the hospital until Dylan is born.
We also had another Echo done since the first post and met with the Cardiologist Dr. Fripp.
He didn't really tell us anything new, except for his atrial septum looked a little small....... he said that he doesn't see it being a problem unless it gets any smaller....... in which case, they might have to do a C-Section due to the fact that he would most likely need immediate intervention. We have another Echo scheduled on February 9th to monitor everything and check his Atrial Septum again. Fingers crossed that it hasn't gotten any smaller! We also managed to get an appointment to meet with the Surgeons and to tour the hospital and the NICU on the same day after his Echo.... so that is going to be a LONG day for me, but it will be nice to get it all done in one day and know a little more of what is going to happen once Dylan is born..... seeing as it's getting so close to his due date, we don't have much time to get everything done and taken care of.
Since my first post, I have started a little fundraiser selling my photography to try and come up with money to save Dylan's Cord Blood. We have received SO much help and support through that fundraiser which is what really helped me decide that I DO want to do this blog. It has helped me see that people really DO care about Me, and Joe, and Dylan and our family. I am so touched by all the help and support and well wishes, and the people wanting updates on how things are going with Dylan, and that is why I am going to continue to do this blog. It's easier to update everybody at once here, and I think that Dylan deserves to have his little space to document his fight and his courage and his strength that I know he will have. I also think that I deserve a space to be able to vent and to share my feelings because that is the only way I am going to get through this. I can't keep everything bottled up, it's not healthy..... and venting and sharing my feelings this way for me is a guilt free way of doing it because I won't feel like I'm burdening anybody with my feelings since the only people who are going to be reading this blog are the people who WANT to read this blog and who WANT to know what I'm feeling and going through.
I'll try my best to keep this updated. I know that once Dylan gets here, I might not always get to post as often as I would like, and that Dylan will be my first priority, but I will try my best to keep everybody updated on his fight and his progress. <3 There might be some random posts because I have started this blog so far into my pregnancy, and about two months since the initial diagnosis of HLHS, that I don't think that I have the energy to relive those moments of denial, and anger, and emotions. All I can do now is go forward from where we are now and continue to grow stronger every day and to keep the hope that I have for my son. Those feelings of anger and fear and everything else still creep in, so I know there will be some posts about those feelings when they do........ but for the most part, I'm going to try and be strong and hopeful and continue to fight for my baby boy.
Tomorrow I have an early appointment for a 3 hour glucose test. When I was in the hospital at 24 weeks, they did a 1 hour which I failed miserably.......... my number was at 179, so they did the 3 hour and I passed with flying colors, but Dr. D wants me to re-do the 3 hour now that I'm 31 weeks because he said they might have done the first test to early. I'm not too worried about it, I'm sure the test will come back fine, but you never know. I'll post the results when I get them :)
Thank you for your support and love! <3
Since the first post, I have met with my Perinatologist who is going to be delivering Dylan, Dr. Sean Daneshmand, and he is amazing. He is truly a very caring doctor and good at what he does. I am able to text him and email him with any questions or concerns that I have, and he gets back to me as soon as he can. Since the first post, I have also been back in the hospital for a week, after going to my weekly appointments with Dr. D to check my cervix last week, I was told that my cervix had shortened to 2.0 ........ they worry a little when the measurement is 2.5 ...... and worry even more when its less, so it was back to the hospital for me........ they put me on magnesium to stop the contractions ........ and it worked........ but it was HELL...... for anybody who has not been on magnesium, it's a HORRIBLE HORRIBLE drug, and I would not wish that on anybody. I was on it for two days, and was completely drugged the whole time and sick and miserable....... but i was kindly reminded by the doctors that it doesn't really matter how I feel right now........ Everything is about Dylan, and keeping him inside for as long as we can........ which I know is true...... and I would do anything for my little boy.... but I REALLY hope that I never have to be on magnesium ever every again. They were finally able to ween me off of the Magnesium and get me back on the Nifedipine and I am now back home.... still on strict bed rest.. no getting up except for going to the restroom and for my doctors appointments. My cervix went back up to a 2.6, but I was told that if it ever goes below a 2.0, i'll be back in the hospital until Dylan is born.
We also had another Echo done since the first post and met with the Cardiologist Dr. Fripp.
He didn't really tell us anything new, except for his atrial septum looked a little small....... he said that he doesn't see it being a problem unless it gets any smaller....... in which case, they might have to do a C-Section due to the fact that he would most likely need immediate intervention. We have another Echo scheduled on February 9th to monitor everything and check his Atrial Septum again. Fingers crossed that it hasn't gotten any smaller! We also managed to get an appointment to meet with the Surgeons and to tour the hospital and the NICU on the same day after his Echo.... so that is going to be a LONG day for me, but it will be nice to get it all done in one day and know a little more of what is going to happen once Dylan is born..... seeing as it's getting so close to his due date, we don't have much time to get everything done and taken care of.
Since my first post, I have started a little fundraiser selling my photography to try and come up with money to save Dylan's Cord Blood. We have received SO much help and support through that fundraiser which is what really helped me decide that I DO want to do this blog. It has helped me see that people really DO care about Me, and Joe, and Dylan and our family. I am so touched by all the help and support and well wishes, and the people wanting updates on how things are going with Dylan, and that is why I am going to continue to do this blog. It's easier to update everybody at once here, and I think that Dylan deserves to have his little space to document his fight and his courage and his strength that I know he will have. I also think that I deserve a space to be able to vent and to share my feelings because that is the only way I am going to get through this. I can't keep everything bottled up, it's not healthy..... and venting and sharing my feelings this way for me is a guilt free way of doing it because I won't feel like I'm burdening anybody with my feelings since the only people who are going to be reading this blog are the people who WANT to read this blog and who WANT to know what I'm feeling and going through.
I'll try my best to keep this updated. I know that once Dylan gets here, I might not always get to post as often as I would like, and that Dylan will be my first priority, but I will try my best to keep everybody updated on his fight and his progress. <3 There might be some random posts because I have started this blog so far into my pregnancy, and about two months since the initial diagnosis of HLHS, that I don't think that I have the energy to relive those moments of denial, and anger, and emotions. All I can do now is go forward from where we are now and continue to grow stronger every day and to keep the hope that I have for my son. Those feelings of anger and fear and everything else still creep in, so I know there will be some posts about those feelings when they do........ but for the most part, I'm going to try and be strong and hopeful and continue to fight for my baby boy.
Tomorrow I have an early appointment for a 3 hour glucose test. When I was in the hospital at 24 weeks, they did a 1 hour which I failed miserably.......... my number was at 179, so they did the 3 hour and I passed with flying colors, but Dr. D wants me to re-do the 3 hour now that I'm 31 weeks because he said they might have done the first test to early. I'm not too worried about it, I'm sure the test will come back fine, but you never know. I'll post the results when I get them :)
Thank you for your support and love! <3
Wednesday, January 5, 2011
A little history
Hello readers :)
So I thought I would start this blog because 1. I have always been better at being able to express my feelings by writing them down, rather than saying them out loud ( because I'm a big cry baby and every time I try to express my feelings, I cry) and 2. Because I am no stranger to blogs, Last year I was diagnosed with bilateral Hip dysplasia and was supposed to have a major hip surgery, and of course the first thing you do when you're faced with the unknown is to seek and search for somebody, anybody who has gone through or is going through what you are, I found some really great blogs from some amazingly strong women who had the same surgery, and reading their experiences really helped me. I am keeping this particular blog private at the moment, because I don't know if I'm fully ready to share my story with just anybody right now, but I know that if I do decide to take the privacy off, that my blog will help other mothers who are in my place right now.......... but for now, this blog is for me.
My writing style is a little random. I don't always use the correct spelling or end a sentence when i'm supposed too. I just let my fingers type whatever is in my head. I'll try and keep this as organized as I can...... but it's a little hard when there doesn't seem to be much organization in my head :)
I'm starting this blog a little late in my pregnancy.... and so much has happened this month alone since we got the diagnosis of HLHS, so I thought I would start the first post off with a little history on whats happened during my pregnancy so far.
July 2010 - We found out that we are expecting!! Yay!!!
August - October 2010 - These couple of months were HELL. I had what is called hyperemesis, extreme morning sickness. I was hospitalized once for dehydration and I lost about 25 pounds.
October 2010 - We decided to do one of those 3d ultrasounds to try and see if we could find out the sex of the baby early, I was only 15 weeks, but we found out we were having a baby BOY!!! We named him Dylan James Perry <3
November 2010 - We had our 20 week ultrasound and was informed that Dylan had an irregular heartbeat and that we were being referred to a perinatologist, and to have an ECHO done of our little guy's heart. Due to stupid insurance and incompetent doctors, it took us 4 weeks to get our appointments set up.
December 2010 - We finally had our appointment with the pediatric cardiologist to do the Echo on Monday, December 6th which is when we got the diagnosis of HLHS. I was admitted to the hospital on December 8th due to having preterm labor contractions, and a short cervix. I stayed overnight and was released, only to be back and readmitted on the 14th where I was kept for a week and released on the 20th. Currently home on bed rest and on medication for contractions.
So there you have it. That is a general history on how my pregnancy with Dylan has gone so far. And that brings me to tomorrow, We have our first appointment with our new Perinatologist Dr. Sean Daneshmand at San Diego Perinatal. I am so excited for this appointment because I feel like we can finally start putting our team together to make sure that Dylan and I get the best care that we can get. Tomorrow is the first out of MANY MANY more appointments to come with many more doctors. I'll keep you posted here on all of those appointments and how Dylan is doing.
Thanks for taking the time to read and follow our journey. I know that we are going to need the support. I am not a religious person, but I know that to the people who are, prayer is a powerful thing for them, So wither or not you are a religious person, I welcome your thoughts, your prayers, your hopes, and your support.
So I thought I would start this blog because 1. I have always been better at being able to express my feelings by writing them down, rather than saying them out loud ( because I'm a big cry baby and every time I try to express my feelings, I cry) and 2. Because I am no stranger to blogs, Last year I was diagnosed with bilateral Hip dysplasia and was supposed to have a major hip surgery, and of course the first thing you do when you're faced with the unknown is to seek and search for somebody, anybody who has gone through or is going through what you are, I found some really great blogs from some amazingly strong women who had the same surgery, and reading their experiences really helped me. I am keeping this particular blog private at the moment, because I don't know if I'm fully ready to share my story with just anybody right now, but I know that if I do decide to take the privacy off, that my blog will help other mothers who are in my place right now.......... but for now, this blog is for me.
My writing style is a little random. I don't always use the correct spelling or end a sentence when i'm supposed too. I just let my fingers type whatever is in my head. I'll try and keep this as organized as I can...... but it's a little hard when there doesn't seem to be much organization in my head :)
I'm starting this blog a little late in my pregnancy.... and so much has happened this month alone since we got the diagnosis of HLHS, so I thought I would start the first post off with a little history on whats happened during my pregnancy so far.
July 2010 - We found out that we are expecting!! Yay!!!
August - October 2010 - These couple of months were HELL. I had what is called hyperemesis, extreme morning sickness. I was hospitalized once for dehydration and I lost about 25 pounds.
October 2010 - We decided to do one of those 3d ultrasounds to try and see if we could find out the sex of the baby early, I was only 15 weeks, but we found out we were having a baby BOY!!! We named him Dylan James Perry <3
November 2010 - We had our 20 week ultrasound and was informed that Dylan had an irregular heartbeat and that we were being referred to a perinatologist, and to have an ECHO done of our little guy's heart. Due to stupid insurance and incompetent doctors, it took us 4 weeks to get our appointments set up.
December 2010 - We finally had our appointment with the pediatric cardiologist to do the Echo on Monday, December 6th which is when we got the diagnosis of HLHS. I was admitted to the hospital on December 8th due to having preterm labor contractions, and a short cervix. I stayed overnight and was released, only to be back and readmitted on the 14th where I was kept for a week and released on the 20th. Currently home on bed rest and on medication for contractions.
So there you have it. That is a general history on how my pregnancy with Dylan has gone so far. And that brings me to tomorrow, We have our first appointment with our new Perinatologist Dr. Sean Daneshmand at San Diego Perinatal. I am so excited for this appointment because I feel like we can finally start putting our team together to make sure that Dylan and I get the best care that we can get. Tomorrow is the first out of MANY MANY more appointments to come with many more doctors. I'll keep you posted here on all of those appointments and how Dylan is doing.
Thanks for taking the time to read and follow our journey. I know that we are going to need the support. I am not a religious person, but I know that to the people who are, prayer is a powerful thing for them, So wither or not you are a religious person, I welcome your thoughts, your prayers, your hopes, and your support.
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