Thursday, December 16, 2010

Finally Being Positive ...

It took me slightly over 2 months to get used to all this newness in our lives. I started to think about the nursery and how I wanted to decorate, paint the walls and any essentials I needed Joe to dig out of the crawl space in our basement around middle of December. Up until that moment I was still struggling to envision bringing this baby home. My sister and Joe keep telling me that I need to stay positive and have hope in order to be strong and that I really need to give this baby a chance, but I couldn’t get the horrible thoughts out of my head that there is a possibility that we would not be able to bring him home with us ever. I had to fight with myself to take that step and go to the paint store or Babies R US for d├ęcor because all I could think of is that if I do all this: prepare the nursery, bring out the car seat, buy the clothes and I won’t bring this baby home, I think I would die by having to see all that emptiness. It’s that instinct that you want to protect yourself from reminding you of grieving or a loss, but finally I realized that I must prepare and hope for the best and not dwell on the bad. 

It took a long time to do this: almost 10 weeks, 3 echocardiograms, 4 ultrasounds, reading almost a hundred blogs from moms in similar situations (good and bad outcomes), searching HLHS on the net on English sites and Polish sites, watching a taped Norwood procedure, joining a few heart mom groups and much more.

Now it’s 10 weeks away the nursery preparations are finally beginning but I feel like time is running away from me. I think that I know exactly what is waiting for me, my son, my family. I read so many blogs just like this one from moms who just were diagnosed with HLHS a few weeks after me to moms whose kids lost the battle, those undergoing the journey as I type this and those who went through all the staged surgeries. I saw the pictures of babies’ right post surgery, 2+ days, 6+ days, months post surgery and I think I’m ready for all of this, but the reality is no matter how much I feel like I can be prepared for this to happen I have absolutely no control over what happens after the baby is born.

It’s all in Gods hands, the hands of the surgeon nurses and staff at the hospital. Most importantly, it depends on how much the baby can handle, how strong he is and how his fragile little body will react to all that will be going around him. So for now please pray for my son. We must have faith.

Based on his activity level in my belly, I would say the kiddo is strong. Sometimes he kicks so hard that I have to stand up, all this is a good sign, and I have only jokingly complained of any discomfort or pain. All this I feel like I took for granted before especially when I was pregnant with Emily. I didn’t pay much attention to the kicks or flutters, the little things. Now I’m so glad when I get good growth reports from the ultrasound tech or when the cardiologist tells me that there are no leaks in the veins. I get worried if I don’t feel him move during one half hour even so I poke him to see if he’ll react, though I shouldn’t do that, I should let the baby sleep.   The healthier this baby is overall including weight and all other development the better he will adapt to the new circulatory system the doctors will create for him.

So now we wait until our baby boy makes his debut and we’ll see how we do. I will update the blog when it’s time to go and then on our progress so that whoever cares to know will be able to follow along on our journey.


  1. I just wanted to stop by your blog and say 'hi'. I am following along your journey and am happy to read that you are doing so much research and looking through a lot of blogs. I did a lot of looking too and it really helped when Hope was born and after her 1st surgery.

    Keep healthy and strong and know that your little man will benefit from all of your positive energy. You will remain in my thoughts and prayers.

  2. Hi, Kathy! I just wanted to leave some words of encouragement for you and your family. I know this journey is difficult and is one that NO parent wants to take. But there is so much hope for these little ones today! And just imagine the advances we'll see in the next 10-20 years! You're absolutely right that we have absolutely no control over what happens after the baby is born; it’s all in God's hands and only He knows what the future holds. Just keep your faith, keep thinking positively, and know that you have a HUGE group of fellow heart moms who are here for you 24/7! You won't be alone through this journey... we are here for you and will be lifting you and your little one in prayer!

    Feel free to visit my blog ( or email me at if there's anything I can do for you or if you need someone to talk to.

    Heart hugs!!

  3. One more thing... I know there are a lot of limitations (financial, geographical, etc.) when it comes to choosing which hospital to deliver your baby and have their heart surgery completed at, but please take a moment to review the U.S. News Best Children's Hospitals: Heart & Heart Surgery report. This report ranks the best hospitals in caring for heart babies and you'll want to deliver your baby and have their heart surgery completed by people who see a high volume of HLHS babies and are experienced and knowledgeable in providing them the very best care for the very best chance of success. Just something for you to think about...

  4. Hi Kathy- I'm so glad to see you started a blog. It can be such a great outlet for advice, letting off steam, sharing your story... so many benefits to it. As the other moms said there is such hope for these children. We will be keeping your family in our prayers as you prepare for your sons birth.
    ((heart hugs))


  5. Hi Kathy
    Thank you for following my blog. I really do share some of your fears. I had started to decorate our nursery before the diagnosis, as yet I am still to finish it and the cot we bought is still boxed and the pram hidden from view. I am so afraid that we won't be bringing our little girl home, but I try so hard not to let that fear show, in case it does take over. We have to be positive and think happy thoughts, I am not particularly religious however I really do believe that faith and belief in things working out can affect how things do eventually turn out :) I am thinking of you preparing and I really hope that your little boy will be strong, I truly believe he will be xx

  6. hii, :)

    Im going to have a little boy due next month who will have HLHS, I also started my blog just to let out feelings and meet fellow heart moms, just know that with God anything is possible and our babies have a great chance. praying for u :)

    carlen <3