Rough Week

This week was rough for a myriad of reasons. First, and foremost, it has been an emotionally heavy week on my heart. This week heaven welcomed 6 baby HLHS warriors. It is so hard for me to hear news like this and I can't even imagine how these parents are feeling. Well actually, I can. I imagine it all the time. I can't stop myself from imagining worst case scenarios. It is hard to hold onto your hope when so much sadness has come to the CHD community. Please keep all these little angels and their families in your prayers: Wyatt, EJ, Kale, Harlow, Sammy, and David.

Secondly, I am back to work. Work itself is fine. I just have this huge amount of guilt. Guilt that I am not spending enough time with Travis and Addison. I get home at 4 and Travis is in bed by 7:30 or 8. And in between that time, there is baths, dinner, etc. :( I just miss them. I feel like I don't hold Addie enough. Since Travis was the first and I didn't go back to work until he was 10 months old, he was held ALL.THE.TIME. I feel so guilty that I do not have the ability to do that for Addie.

Thirdly, next Friday is Travis' cath procedure. I am a bag of nerves for it. His reaction to the last one was so bad and I am scared it'll be the same this time around. I am hopeful that they will be prepared this time and anticipate an allergic reaction to the anesthesia. I am hopeful that they will be able to open up all the narrowing. I am hopeful we can push his Glenn/Fontan out until the end of the (17-20 month) window that we were giving. Please keep Travis in your prayers this coming week.

I'll leave you with some pics of my cute loves!

Travis practicing his coloring

Addie is such a smiley baby these days

Kicking the Croup

So, it seems as though Travis has kicked the Croup. He still has a little bit of a cough but for the most part he seems to be feeling so much better (Praise God!). Now we need to figure out why every few nights or so he wakes up much more than the others. Overall he is doing well with sleeping in his own crib at night. The nighttime routine is working and he knows when it is bed time. We are still having difficulty getting him to nap in there. If he happens to fall asleep in his crib for nap time it is generally only a short nap :( He really needs a LONG nap to be a happy boy and make it until a reasonable bedtime. I had hoped we could get the napping-in-the-crib thing down before I went back to work but, we did not want to make him cry it out when his throat was so sore with the Croup....so, mission failed :( I am back to work on Monday so we are out of time. I am hopeful that my mom, who will be watching the kids for me, will be able to get her own system down and that it won't be to difficult for her to manage both kids.

We also heard back on the date for Travis' heart cath. It is scheduled for Feb 4th, two weeks from today! The doctors seem pretty confident that they will be able to open up his aorta without having to have surgery. Let's pray that this is the case!!!

In other news, we are in the market for a minivan. It is getting so difficult to manage both kids in our garage and parking lots with the doors in my CRV that open out. AND, the kid's double stroller is big and clunky too. I can't believe we are at that stage in life were we need a minivan. Talk about moving fast.....we've gone from no kids to 2 in such a short time! Don't worry, #3 is not planned in the near future! ;)

Come and Take a Ride in my Coop, Croup.

So, Travis has croup. He has had a runny nose for several days now and I actually started to worry about it so I made an appointment with his pediatrician on Tuesday afternoon. Lungs, ears, nose, throat....all looked well. So, we went on our merry way. Of course he started sounding like a barking seal immediately on the way home. I wasn't sure if I should be concerned because 1) he had just been checked out, 2) his SATs were fine, and 3) he has been crying a lot due to the sleep training. Anyway, he sounded so pathetic that I decided to call his cardiologist on his cell (I'm sure he regrets giving me that number :). Anyway, he said to bring him in and he would meet me at the office (at 7pm). He is so awesome! After exams from a different pediatrician and his cardiologist they both agreed it was croup (an upper airway virus that is fairly common). Dr. Levy ordered an x-ray just to make sure all looks well. Travis is bigger than the last time we had an xray and he had to be put into the PIGG contraption this time. That thing is scary looking and of course Travis cried the whole time :( His xray looked normal. The doctors sent us home and told me to come back if anything seems like it is getting worse. So, we wait and pray that it doesn't get any worse....

Meanwhile, we were waiting for Travis' doctors and surgeons to all get together and discuss the plan for him. Today we received "the call". Dr. Levy brought his chart and information to the surgeon's at Childrens and the consensus is.....we stick with the original plan. Travis will be scheduled for a heart cath in 2-3 weeks. In the cath, they will open up the aorta. Then, they want to do his Glenn/Fontan combo anywhere between 17-20 months of age (hopefully, the latter). It would be better for Travis to be bigger and stronger before the next surgery. So, although we are still anxious, we are happy that (for now) we are back to only one more surgery.

In other news, Travis is sleeping in his own bed! Almost two weeks ago we started putting him in his bed. For the first week, we stood there by his bed until he fell asleep. This was working okay EXCEPT he woke up every few hours and I'd have to go in there and stand there until he fell asleep again. After a week of VERY broken sleep, we decided to do cry it out. Travis needs to learn how to fall asleep without momma or daddy there. The first night was so scary. We let him cry for intervals (5 min, 10 min, 15 min) and it lasted 1 hour. Roger and I were so scared. We were worried that it was stressing his heart. But, after awhile he fell asleep. I am happy to report that every night since then has been a bit better!!! Now, I need to get naps figured out. He just will not take a long nap in his crib. Hmmm, I only have a week left before I got back to work to figure it out.

Please pray that he kicks this croup quickly! Thank you!

Give Back and Light the Way

Ask any heart parent about the moment their child was diagnosed and they can tell you, in great detail, exactly how it happened, who was in the room, how they felt, what else happened that day. One of the most difficult aspects of the heart parent journey is that moment of diagnosis - the moment when your life changes forever. There is so much to process at that pivotal point and in the days and weeks to follow. Most newly diagnosed heart parents turn to the internet for answers and information about their child’s heart condition. Hypoplastic Left Heart Syndrome (HLHS) is, in particular, an extremely complex condition and much of the medical information available online is out-of-date and speaks of hopelessly outdated survival rates and lack of quality of life for singleventricle children. As a result, many newly diagnosed parents are left feeling hopeless and very much alone, forced to make critical decisions about their unborn child without a true understanding or complete picture of how well many of these children actually do.

I, along with nine fellow heart moms, would like to reshape the outlook for HLHS infants and children. Over the last few months, we formed Sisters by heart - an HLHS support group - to provide support and resources to newly diagnosed HLHS parents. It is a way for us to give back and light the way for another family following behind us on an otherwise very dark path. We want to give hope, to give love, to give support, and to give practically. We provide care packages for newly diagnosed parents which includes many items we’ve found useful to us along our journeys (pacifiers, mini-notebooks, specialized baby clothes that allow for tubes and wires, etc.), bio sheets on our children (there is nothing to give you hope quite like seeing an older child with your child’s same condition who is flourishing) and informational booklets and fliers providing current information on HLHS and options for newly diagnosed parents.

I know many of you who read my blog have been touched by Travis’ story and the stories of so many of his heart friends and are eager to find a way to help. Here is your chance.

Sisters by heart is comprised of 10 heart moms from various cities around the United States. We are seeking help with our initiative, either through donated items or financial assistance. (Please understand that we are not yet incorporated as a 501(c)(3) – we have not ruled this out, but it is not yet something we have pursued – so any financial contributions will not be tax-deductible at this point.) We hold Sisters by heart dear to our hearts, as we realize there is a significant need and lack of direct support to newly diagnosed HLHS parents. To help Sisters or to learn more about our mission, please visit our blog at www.heartsisters.blogspot.com or email sbhmoms@gmail.com with any questions.

Please, join us in giving back and lighting the path for newly diagnosed heart parents.

From our hearts to yours,