Wednesday, May 4, 2011

Mommy Had a Meltdown

To say that today was not a good day is an understatement.  Kennedy had an earlier than planned cardiology appointment, to get her Lasix increased.  Mommy had a meltdown.

While she is gaining weight, the doctor wasn't thrilled with it.  She's weighing in close to 10 pounds now, but not gaining as fast as she was a few weeks ago.  Hopefully, with her Lasix increased (again) she will start gaining faster (again).  He explained that the heart failure is progressing, which is normal for her condition and to be expected.  Every time I hear the words *heart failure* in regards to my daughter's condition I cringe.  Well today, I cried.  A lot.  I know that she's doing well, and that this is to be expected, but it doesn't make it any easier to face.  The poor doctor, was not our normal cardiologist.  We met him in the NICU (and he saw my boobs while I was pumping and talking to him one day.)  I'm not sure if he remembered me, or my boobs - but he remembered Kennedy for sure.

Each day closer to surgery, things get harder.  In the beginning, it was months down the road.  We had other obstacles to overcome.  Now when we refer to surgery, it's in *weeks.*  While I can't wait for it to be behind us, so we can start really living our lives, I also dread the day.  I'm not entirely sure how I'm going to get through the next six weeks with out losing my mind.  I wake up completely freaking out about one thing or another.  How am I going to starve my baby the night before surgery?  How am I going to get through saying our "goodbyes" as she goes into the OR?

She had to have blood drawn to check her electrolytes today.  I agreed that we would pay out of pocket just for them to do it at the specialty clinic, rather than having to go to the lab.  Of course, we had been there for almost 3 hours, and Kennedy was over it.  Mommy was over it, and we had both already cried.  I had to hold her, while they pricked her heel a few times and squeezed the blood out into a tube.  It was horrible.  She screamed, and screamed and screamed.  And I cried, and cried, and cried.  If I cried this much at a blood draw, how the heck am I going to handle open heart surgery?

Kennedy relaxing after her traumatic morning (notice the matching band-aids on her heel.)


  1. Kennedy is so sweet and beautiful! I love her Easter pictures! What a sweet sweet baby!

    WOW! I just read Kennedy's birth story...AMAZING! I know exactly how you feel! We had no idea anything was wrong with Olivia either and were completely devastated when she was diagnosed with DiGeorge and the CHD.

    I also read about the weight gain and "heart failure"! Every appoint is going to be different, next time they may be happy with her weight gain. You will learn to just smile and shake your head. Olivia is 5 years old and 26lbs. She was only about 5lbs at 6weeks old when she had her surgery. And who knows, sometimes once they have surgery they plump up fast. So Kennedy could be a chunker in no time!!

    Thank you for sharing your site with me. I look forward to reading your posts.

    Heart Hugs <3
    Jamie Masengale
    Mended Little Hearts of St.Pete

  2. (((HUGS))) don't worry, I cried plenty. As for the blood draw versus the surgery...that's why I was glad I didn't have to be with her for the surgery! I cried at the blood draw too. And I cried when I let her go. And I cried when they told me she was out and doing great. If your surgery is like ours, we had to check in at 6 am, now while she was in heart failure, Reagan normally fed at 11 then slept till 6 or 7, so not feeding her the night before was normal for us. Also we were told that she could have breastmilk up to 4 hours before so it won't be so bad. Hang in there mama it will all be over soon. And if you ever need to just talk, let me know, I know that helped me.

  3. Ellie hasn't had her surgery yet, but I can offer to you that Kennedy will have an easier time than you. Ellie had GI surgery when she was one day old. Yesterday, she had four shots.
    my mom had to take her because I couldn't leave work. Ellie didn't cry for the first two shots. Kennedy is tough and WILL be okay. Thougts and prayers!