Hypoplastic Left Heart

[Minsons]

Hello! This is our first time on here and seems like a great place to be. We are the Minsons and just gave birth to our third little girl, Dysamae, who was born with Hypoplastic Left Heart Syndrome. She has already had the Norwood and is still in the PICU recovering. We are waiting for the day that we finally get to take her home. We would love to hear any advice or encouraging thoughts about her condition and what to do while we wait for her final days of her hospital visit.

[busyhoneybee]

Glad to see you've found your way here. This is Melissa - I met you while you were int eh waitingroom during your daughters surgery. My advice is to ask questions - understand fully what you are going to need to do for her when you get home, Understand the meds the best you can. Good luck!

[4Hursties]

We were the couple in the surgical waiting room having our daugter's surgery at the same time as yours. Please let us know if there is anything we can do for you.

[AngelMom]

It was great to meet you (mom and the girls at home). I look forward to you bringing your little one home soon and then I can come visit :0)

[Allison]

Hi,

I just wanted to introduce my son Ethan. He just turned 2 this month and will be having his 3rd surgery (Fontan) later this year. He is doing really well and is very active. We started a blog right before his 2nd surgery (Glenn) which took place when he was 4 months old. You are welcome to visit our blog at www.ethanjamescurtis.blogspot.com. Also, feel free to contact me by e-mail at allisoncurtis19@hotmail.com. This is a scary and stressful road at times, but it is worth every step. Hang in there.

---Allison

[Minsons]

Hello Everybody!

[Heart Mommy]

Hey guys,
Welcome to our group and welcome to your sweet little girlie. Our son Alex also has HLHS and is two years old. If I could tell you one thing that is encouraging it is; EVERY SINGLE HLHS baby is DIFFERENT. It may seem like there are so many things that go right or wrong. Our guy always has a lengthy stay, along with many infections and complications, but, we don't have eating issues or many of the other heart or body problems that are associated with heart kids. We all deal with it differently too. Even my husband and I are very different in the ways we de-stress.... So with that being said. NEVER, feel like you can't share how YOU feel or tell us how we can help. There is a great book that I just read and wished I would have read it in the middle of all of the "high" stress. It is called 'Amanda's Gift'. One other thing. Get a picture of your family together as soon as possible. Get some newborn pictures with good lighting if you can. I will come up with my gear if you want. Those pictures are pricelss. Even if there are tubes and such, we can hide them. I look forward to meeting you sometime... They do get better, they do get to come home. (keep telling yourself that) Good luck we will be thinking about you!

[SBAimee]

Welcome to the group. I hope everything is going well for Dysamae.

Do you have a blog for your little girl? We have found it to be a great way to get out accurate information to everyone while you are in the hospital. It also helped me to take lots of pictures and document all that was going on, which is now really interesting to look back on. I also love getting to know other heart families through their blogs. Some people just use their family blog if they already have one, but when we found out about Jack's condition during the pregnancy I started one just for him and it's worked out nicely. www.jacksonhardy.blogspot.com

We look forward to getting to know you.

Aimee Hardy
mom to Jack, 10 months, HLHS

[Nicolew]

Hello! I would like to RE-introduce myself and my son, Kyler. Kyler also has HLHS. He will be 2 in July. As Brynn stated, every child is different. My son had a lot of complications early on, but is doing relatively well since his Glenn. He is behind in development and doesn't eat by mouth, but is a BLESSING to have every day, as are his brothers and sister. Kyler suffered two strokes after his first stage was completed, due to clots. I would ensure that you are soaking up ALL the information you can. I know that I was completely OVERWHELMED at the first meetings with the card's but after I spoke with Brynn (who called me up at the hospital to offer her support) I started trying to listen to everything. You are your childs BEST advocate, so learn what you can. The more you are up there, the more you learn. Ask a lot of questions and make sure they are being answered to where YOU understand them. Sometimes docs tend to talk in "medical" terms and leave us completely baffled, don't let them do that and don't be afraid to stand up for things you feel necessary/unnecessary. There are social workers up there all day, they can help you get things going with SSI.
Kyler was in the PICU for almost 3 months before he was able to come home. You want to stock up on sanitizer!

Good luck! We all know how you are feeling, but know that Primary is a wonderful hospital and will not let you go home unless you are able to care for the baby. You will be WONDERFUL! It comes quickly.

[Alli and Kyle Hicken]

Congrats on your sweet little girl! My son, Grant (HLHS with a lot of other complications), was released from this hospital just a few weeks ago. We were there for the first 2 months of his life due to a lot of complications, but home is a WONDERFUL place! I was really exhausted initially trying to learn the medications, schedule, feeding tubes, etc. but it really does get a little easier. In preparation to go home, I would agree...stock up on the hand sanitizer! Pay attention, ask questions, and get to know all of her needs before you go. Do as much as you can for her now and it will make things less crazy when you go home. Also, ask that your night nurses try to limit their examinations and bothering so that you can try to get her on a schedule! Grant partied a lot with his night nurses and so his schedule has been awful! We also have a blog to document everything and share. Feel free to look in grantmeaheart.blogspot.com. There is a LOT of wonderful support...just don't be afraid to ask!

Alli Hicken

[rainsplats]

Hi - this is Nan and Jason.

How's Dysamae doing? Didn't realize you'd been in the picu that long. We're sending lots of prayers your way. Hope she's home soon :)

Summer's back in the picu for a bit...hopefully we'll run into you guys.