Saturday, November 13, 2010

Emotionally all over the place....

Lately I find myself comparing our situation to others, I dont know why I do it I really try not to but I cant stop myself and its getting me no where emotionally. I still ask myself why and I still cry out that life isn't fair. I feel like people around me think that I should just except everything and just go with it but I cant stop wondering what if.

I decided right after we found out that Parker had HLHS that I didn't want a baby shower and that I didn't want a nursery because I was thinking about all the what ifs. I didn't want to come home to a house full of things that represented his life if he wasn't here with me. I don't understand why I cant just carry on like everything is normal and celebrate this pregnancy as if everything was ok and that he WILL come home with me. I feel like I'm mourning the loss of my baby before he is even born. I don't know if I made the right decision by not wanting things because now I feel like I'm not prepared for a baby that very possibly could come home.

I am just such a mess and feel so alone through all of this. I feel like I'm "behind" emotionally when I compare myself to other heart moms who are currently going through or have been through this already. I have more bad days than good lately. I think its because the time is getting so close. I can't look at baby things in stores without crying or feeling sad. I cant be happy for other people whom are expecting or just had a baby. I feel like I have so much hatred and I don't like it, but how do I just get over it and except my situation?

I find myself saying if he comes home instead of when he comes home. I don't want to be so negative about everything but I guess I'm trying to prepare myself just in case. I don't know how to explain all of this to people who have never been down this road. I don't know how I'm supposed to feel or if all of my feelings are normal. I don't even know if there is even any such thing as normal anymore. My life feels like its turned upside down and inside out and everyone is just staring at me like I'm a nutcase!

On another note I quit my job this week. Not because I wanted to but because I have no choice and Its time to start preparing for little Parker to make his entrance into this world. Once again this made me compare my situation to everyone else all week long. I didn't quit my job to become a stay at home mom to a perfectly healthy baby like I had always dreamed of. But I quit my job to become a stay at home mom to a very sick and very fragile baby. I cried so many tears this week because I knew this was it, this was the beginning. I have nothing more to keep my mind occupied I will be sitting at home getting everything ready for Parker. 

Thank god for my husband because without him I would have crawled up in a cave somewhere and given up already. I just hope that he continues to keep his strength through all of this because I know Im going to need him more than ever in the coming months. I love you so much Adam and I know that you are going to be the best daddy in the whole world! Thanks for being my support and strength through all of this. Parker is the luckiest little boy in the world to have a daddy like you and I cant wait for him to get here so we can meet him!


  1. Heather, I want to tell you that ALL OF YOUR FEELINGS AND EMOTIONS ARE TOTALLY NORMAL! Every word you wrote, I felt at some point. I cried. I screamed. I wondered, why me? I still do. The days that I do feel this way grow farther and farther apart. The anticipation of Parker's arrival is horrendous. I know, I've been there. When Parker arrives, you will be strong. You may not believe it, but somehow, somewhere, you dig deep. It may be partial shock, but you will survive.

    I feared preparing Zoe's nursery, for the same reasons you state. I regret not having it totally ready for her. yes, it's painted, but I never hung her chandelier, wall hangings, etc. I really wished I had. I know its easy to tell you to think positive, but implementing that is hard. Try. Try to be positive. Trust me, it will make a big difference for you and for Parker. Positive energy is a strong force. I will send you much love and light over the next several weeks.

    You have a lot of support in the heart community. And none of what you wrote is alien to them. We've all had these same thoughts and emotions.

    Hang in there hun.

    Heart hugs,

  2. So first of all your feelings are normal and I remember those thoughts/what if's like it was yesterday. I remember going through my older son's baby clothes and crying because I did not know if Jake would ever get to wear them. I remember telling everyone NOT to buy anything for the baby. Telling my husband not to decorate the nursery. I was so afraid of not bringing him home. I also said If I bring him home. Its a defense mechanism. This situation is not normal. It's so hard but I promise you that when Parker comes you will go into survival mode and you will be strong enough. The pregnancy was the hardest part for me because of the unknown. I finally decided to have my husband decorate the nursery before he came to meet us in Philly and I am glad I did. We did not go over the top because like you said I did not want to come home to that but we also were prepared.

    I won't say that the worry goes away completely because it doesnt. There is not a day that goes by that I don't fear or worry about Jakes future. I do however push it out of my mind because he has survived most can't imagine. He was so very sick at birth and his odds were low but now he is here smiling, living a happy life just like any other 7 month old. The first few months were hard, very hard... but it is so much easier after the Glenn.

    Don't beat yourself up over your what if's. I would worry if you were not going through that. I do suggest you buy something for Parker. You will need button up outfits for him to wear at the hospital so the lead wires will go through the openings. Buy some of those and maybe a blanket or a stuffed animal. Allow yourself that, you need it.

    IF you ever need to talk please message me.

    Heart Hugs,

  3. i dont know if i wrote it in my blog but i did read a book or artical about "dealing with a sick baby" and it does say in there that we will go through mourning ... because we are and although i hate HATE that you are going through this i am glad that we found each other because we are so close in dates and are going through a lot of the same things... and seriously i feel everything in some way you do... you do what you need to to get through the day!
    i say IF she comes home and not when... and i get a lot of shit for that but you know we are thinking of everything...
    love you girl and you cry and scream when you need to message me when ever xoox

  4. Hi, My name is Heather. I recently found the on-line community of heart moms/blogs and I have been keeping up with several of them. ALthough I am not a heart mom, I just wanted to let you know that I will be praying for you and Parker now and in the coming months. I can't give advice, I have never walked your path, but I will be lifting you and your precious boy up in prayer.

  5. oh honey,

    everything you are feeling is normal. I felt every single one of those emotions, questions, and frustrations while I was pregant with Joshua.

    But...don't compare. don't do that to yourself. Each CHD baby is unique, each mommy, emotion and way of dealing with things is different. don't you for one second, question yourself adn your feelings.

    When I was pregnant, I looked up information about grief. I felt like I was grieving. From the information I found, i truly was grieving. Grieving the loss of all things normal. It's ok to do that.

    I've had to step back from HLHS blogs since Joshua passed away. It was hard for me to read about your emotions- I wasn't there too long ago. HOWEVER, don't ever be afraid to contact me or ask me about my experiences. I'm more than willing to help support you in any way you need!

    Much love to you,


  6. Hi Heather,

    I know it is SO hard not to compare. Especially with all the resources we have that are a great way to connect, but you can also take from that that each child's journey is completely different. Feel encouraged that from all the ways you have prepared, you have already given Parker a chance. Just saying YES to his life is the greatest blessing one can give. You are truly a special, chosen momma to be on this journey. God does not make mistakes.

    Like the mom said above, maybe just going to get Parker a few special things for the hospital is a great place to start. Little caps for his head, soft blankets and a stuffed animal you can start sleeping with now to get your scent on it and then leave with Parker when you can't be with him at the hospital. Love and hugs for more brighter days!

  7. Hi Heather - thanks for posting on our blog. We found out at 20 weeks that Jordan had a heart defect and at 28 weeks that it was HLHS. We cried almost every day after that. We prayed our hearts out and so did all of our friends, family and complete strangers. I think we were even praying about praying! We are home now for the 2nd week out of 6 weeks of his life. We feel so incredibly lucky to be at home with him. People are giving us all kinds of advice about what we "need" to do with him. Stimulate him, get him on a schedule.......etc. We were sitting here yesterday laughing about all of the advice. We looked at each other and said we will just hold him and watch him and love him 24/7. We are just going to enjoy every second that we have him here with us. Please contact us for anything. advice, moral support or just to vent. the other heart moms helped us cope through all of it and i am sure that we will need them more as our journey continues. they are all awesome, loving giving people.

  8. Hi Heather, I am a heart mom to mason (HLHS). I found out at 18 weeks he had a heart defect. I felt so much like you. We had another healthy baby who was just over a year old when we found out about Mason. I had a very hard time preparing for mason's birth but as the day got closer I found an inner peace with GOD. Trust in him and he will lead the way for you. We had a rough road with Mason and he spent 16 weeks in the hospital with multiple infections. Now we have been home for the past 4 weeks and he is thriving. He has gained almost 3 pounds in that time. I never knew for sure if Mason would come home from the hospital but now that he is here he is just a normal 5 month old baby and all of my fears have retreated. I am praying for you and little Parker. You will make it through this and you will have an amazing strength come over you when you see your precious baby's face! Stay strong you CAN do this, you will see.

  9. Hi Heather - I am another heart mom. Not sure how I found your blog, probably through Kathy or Stacey, my partners in crime in this crazy HLHS journey. ;-) At any rate, my little guy Bodie is almost 9 months old and is 2 months post-Glenn. He is doing amazingly well now and some days I almost forget his huge heart defect. He truly seems like any other baby to me.

    But it has been a rough road, with a lot of ups and downs. I remember being in your exact shoes. I think the prenatal period is the roughest because there are just so many worries and fears. At least once Parker's here, you can do something - you can pray (if you pray), you can ask questions, you can sit vigil by his bedside, you can pump and make milk for him. There's a lot you can do that you do have some element of control over. But you can't do any of that prenatally - you can't really do anything but sit and worry. So it's a tough place to be in.

    I can totally relate to everything you're feeling. I didn't have a shower for Bodie either and specifically asked people not to give us gifts. I actually regretted that decision later, because we never had an opportunity to celebrate his life with friends and family in a shower setting. I swore I would have a shower for him once he got out of the hospital. He ended up having such a long stay it seemed silly by the time he got out, but let me tell you, we're going to have one heck of a 1st birthday party! :-)

    The best advice I can give you is just to try and breathe and relax as much as you can. I think the point I finally got to was the realization that there would be plenty to freak out about once baby was here, so I was going to try as hard as possible to enjoy the pregnancy as much as I could while I was pregnant. The reality is that pregnancy is a blessing and just to have another life growing inside of me was such a miracle I wasn't going to ruin it by dwelling on the painful parts of it. So many women would give anything just to feel a baby kick in their womb - I just tried to focus on that as much as possible. Also don't know whether you're religious, but my faith in the Lord and Jesus Christ have been my all-sustaining thing through all of this. It hasn't always been easy, but you get through the best you can. I also, echo the idea of buying just a few things for Parker. I suggest a couple of hats, shirts that snap up the front and babylegs (legwarmers are absolutely invaluable in the hospital - hospital rooms are notoriously freezing and they always need access to feet, legs for blood pressures, not to mention diaper changes are a pain if you have to get pants down over a pulse ox probe!). :-)

    Looking forward to following your journey,

  10. Hi Heather,
    I'm Lisa, Olivia's Mommy. I know you follow our blog, so you've got the background of our story. I mean the following with the utmost sincerity - I think you're being way too hard on yourself. Everyone deals with things differently and you can't fault yourself for that. Me? I chose to look at delivering a baby with HLHS like any other pregnancy with eyes wide open.
    There are moms out there that are going to deliver a heart healthy baby and sadly lose them during the course of labor or unexpectedly afterwards from a fluke. I know that's awful to think of and say, but there are no guarantees in life. I think about those mothers often, they had their nurseries ready, baby clothes washed and folded in the drawers and (most likely) never thought about the possibility that they would come home without their babies.
    It is those mothers that gave me the courage to go ahead and celebrate Olivia's arrival. I did have those thoughts of "Dear God, please don't let me come home to a home ready for a baby with empty arms" - but I really pushed them out of my head because I felt like I wasn't giving Olivia the benefit of the doubt. Our babies are born fighters and while I know that she is doing wonderfully today, that may change at any time in our life. But again, no different than the parent of a healthy child that passes away from a freak accident. Those things happen every day and I am wiser since HLHS came into our lives to savor the moment and make all the memories we can together as a family.

    Please let me know if there's anything that I can do for you.

    Many hugs to you,

  11. From the above can tell we heart moms have all probably experienced the same or similar feelings. It doesn't make yours easier for you and don't ever feel bad about what you are feeling.

    I didn't have a baby shower or get Hope's bedroom ready (she sleeps in our room anyway). I bought a few little things before she was born and I worried about the 'if' she came home. The last 5 months of my pregnancy were hard...harder than I want to think about. My emotions were raw and I don't like to think back to that time.

    Our babies are tough and you will be surprised at the strength they have. I can't imagine going through the surgeries, caths, feeding tubes, therapy, etc...that Hope has been through in her 14 months, but I am so happy she is sleeping in her crib right now. Her doctors and I never expected her to be 14 months and sleeping peacefully in her crib. I am glad we switched doctors and I am thankful for every single second of every single day of our lives together.

    You are in my thoughts and prayers as you move through your pregnancy and continue on your CHD journey.