Sunday, August 2, 2009

Excitement, understanding, and the love of my blog

I've been asked about a gazillion times if I'm getting excited. For the record, I can not wait to see what my daughter looks like. I can not wait to hear what she sounds like and I can not wait to hold her in my arms. And for the record, I'm scared out of my mind. I'm hoping that I'll be able to get a memorable look of her before she is wheeled off to the NICU. I am not really certain when I'll hear her for the first time since I understand that they prefer her not to make a peep but to be immediately hooked up to a ventilator. As for holding her, I hear that can be a week to three weeks. ........I am fortunate enough to have some incredibly understanding and empathetic people in my life that understand where I'm coming from. I, unfortunately, have those in my life that get a glazed look or turn silent as if something is wrong with me as well.

A few posts back, I was talking about frustrations, people in our lives, making confessions, etc. Well, someone that must be a kindred spirit, was talking about how she really distanced herself from others. Actually, a few that left comments seemed to be on the same page. ...Well, I feel that particular "distancing" instinct, increasingly, as the time for Ireland to enter this world nears. I talk on the phone less, have days where I don't care so much about facebook, decline offers for bbqs and the like, and even have been distancing myself from family (fairly easy when they're pretty far away). Sadly, I have a few people that I haven't exactly black-listed but at the same time, I just don't want to talk to them because they either say all the wrong things or they misunderstand or misinterpret me so much that I prefer to keep them at a major distance.

I feel that alot of people think I'm terribly negative right now. Honestly, I'm not. You figure a decent blog post takes anywhere from 10 minutes to a little less than an hour (if I'm really on a role). My emotions go from high to low and back again all day and (lately) all night long. When I sit down to write, it's a time of sorting through my emotions and such. I usually am alone except for any pets that happen to laze around me. The computer room stays fairly dark and quiet, I have a window if I choose to want light or fresh air, my bedroom is across the hall, there is a bathroom next door (where I'm often going to and from during any posting), and next to that is Ireland's room. ...I'm fortunate to have this room and I'm fortunate that my family sees that this is important alone time for me. I've never been a meditation type, I'm not really into exercise right now and well, this is my time. It's my blog and it's become a lifeline for me. It's my diary and it's where I turn to say anything and not feel heavy judgement. It is not quite my religion but it is bringing me closer to my God, whom at times, I've not felt as close to in some time. .....I just wanted to throw out there to the world at large that I'm thankful to be here, right now, in this age and time. I have needed the understanding of those that I've encountered through this technology. I believe others have needed me and the countless others that have supported them. I thank everyone that leaves comments and those that I can simply feel are praying for me and wishing us the best. I thank those that have left their blogs for me to read at random.
I've become a blog "stalker" as I near the end of my pregnancy and the beginning of this CDH journey. I am tired and don't move so much now due to 10 minutes of working equals about a 2hour napping excursion (slight exaggeration but not too far off the true mark). ...anywho, I've started that thing again where you go to all of the other CDH blogs and after reading the most recent post, you go back a few months, read what they had going on and compare notes. Am I feeling this way too, what was their final outcome? Am I going through this physically? Is my baby doing this too? Did he just say that's what he learned or am I interpreting this wrong? Have I taken what I'm supposed to from this particular post and thrown it in my memory bank so I'll understand later on? Woah!, she thought the same things I'm thinking and I don't want that outcome. or Wow!, that baby is over 2 now and she is still going through this?! or better yet, Amazing!, I hope that is our story too. a morning of "blog stalking", I'm likely to cry, smile at some beautiful babies, get pissed at God, feel I've learned something valuable to tuck into the memory bank, feel overjoyed for a family, get ticked that they seem so grateful while I'm just moody, and pray more than I ever have and hope each word is heard and acted upon according to the greater good (is the greater good the right terminology here?...don't know, doing my best).
Anyway, these are my random thoughts for this morning. It's my scatter-brained entry. Think I'll go sew something, brush my teeth and basically, have a completely lazy Sunday with some laundry thrown in here and there.


  1. Hi there,

    I'm the mother of a CDHer too and I've been following your blog for a few weeks now. I can completely sympathize with everyting that you're saying and just want you to know you're not alone!

    When I was preggers, I wanted to talk about CDH and explain to people what it was. I felt like I was somewhat of an expert (but looking back I was not even close) and wanted to impart my new found wisdom. It almost removed me from the situation for about 2 minutes, like I was a medical professional explaining what this baby had. And that would somehow make me feel a little better. But then reality flooded back as soon as folks started to inquire about what would happen when the baby was born.

    I see it said quite frequently on CDH blogs, but it's true...CDH is a day by day, sometimes minute by minute rollercoaster of emotions. So,don't feel like you need to apologize for the ups and downs or blogging to blow off some's normal and you deserve to.

    I will be keeping you in my thoughts and if you ever need anything don't hesitate to let me know (

    PS...I am addicted to CDH blogs too! I read and re-read several times a day. It's comforting to know I'm not alone and it's also comforting to know that maybe some part of my experience could help someone else.

  2. In the beginning when I first found out about Kayla's CDH- I was not positive. In fact it took me a long time to cope with what she had and strike a positive attitude that she was going to be ok. I went thru my highs and then some very low lows!! I missed a lot of work, and cried almost the whole month of october. But when she was born they intubated her and let me hold her - long enough for two pictures. Then 3 weeks later I got to hold her again.

    You will go thru a lot in your time in the NICU some really great highs and some really low lows.. just like now .. when you are pregger. You will get through it tho. I don't believe myself to be a very strong person... but with the help of these blogs- and Patty and Vince (gumdrops parents) knowing people out there went thru this same thing and survived- helped me day to day, hour by hour- minute by minute..

    Some nights I'd leave the NICU crying- other nights I'd leave happy as pie! And every night my rents expected an update- I used chat online to do that bc phone calls were just to exhausting..and I wasn't sure I wouldn't cry.

    Just know that I am out here if you need me - as are every other CDH blogger- we've been there, done that- and can help.

    Stay strong - and post every feeling you have bc I swear we all had them and probably still do. Just as I read your blog I cried bc everything you said I felt at one point or another. And I too am a blogger addict. I must know how these babies and their parents are. I like to help any way that I can!

  3. I felt the "distancing" also, but mine came after Katie's birth (since we were undiagnosed). My husband and I felt like we were operating in an alternate reality, going through this CDH storm, while our old lives went on without us. We had awesome family/friend support, but mostly we just wanted to be more to ourselves. The blogs are wonderful because it really weighs on you to have to repeat the daily happenings over and over each day. We will be praying for you!
    ~Beth, mom to Katie (RCDH 4/9/09)