The day is near

[Bless her heart]

So we have an induction date of October 15th, where I will be 39 weeks! I was 39 weeks when I delivered my other two children, both of which have Healthy Hearts... as far as we know. This means that we have only 2 1/2 weeks left until we will meet our lil' gal... Lilliana Faith. She will be born with a large vsd, pulmonary atresia, and double outlet right ventricle. There are a million possibilities of the details of what her heart will need. They haven't found a pulmonary artery or branches. They aren't sure that our baby has the normal DUCT that closes at birth. They see something below where that duct normally is. They are hoping to have something with good flow... if not, then the shunt surgery will be in order for the first week, BUT as far as the surgery at 3-6 months, we will find out after birth EXACTLY what her heart is in need of. I'm praying that they won't have to filet other smaller branches and sew them together. We have been told that this is more complicated and presents more problems, so we are praying for something BIG that produces some good flow. Also she might have a clubbed foot?... and she has one kidney (but we recently found out that Daddy does too!) I wish that these were our biggest concerns. Anyways... the 15th is the date~ and we are excited to welcome her into our family! I pray that all goes well and that we get to enjoy her. I've already been humbled so much and realize that I def. took healthy babies for granted. I feel blessed to be Lilliana's mother and am so thankful to have other parents who can help support our family through this! Oh, and any advice about hospital stay would be great. I had both of my other two children, naturally at the hospital and was home a couple hours later!! So this is a NEW experience for me! What should I bring? I'm from Soda Springs, Id... which is 3 hours away from the University! Also, our insurance STINKS and is denying everything. We aren't giving up, but... what things could I bring that they would be charging me extra for at birth? We can't afford extras at this point! I've been told that Lilliana won't need clothing, considering she will be hooked up to too many tubes and such to wear them. I need a survival list!!!! I appreciate any help! Thanks again!

[BraveHeart]

Jessica,

Its great to hear from you! Brynn Homer, IHH Secretary and mother to Alex put together a small list of some of the things and such that PCMC offers to you while you are there...some you might already know.

http://intermountainhealinghearts.org/support/hospital-stay-information/

We are truly excited about the birth of Lilliana and hope and pray that everything goes as smooth as possible. As I read your post I too remember the stress and joy that my wife and I both felt when our daughter was born. It was quite a experience, talking about the VSD, missing pulmonary artery and branch arteries issues sounds so much like the same concerns we faced 5 years ago, as well as congenital dislocated hips and tear duct problems which were both also operated on several times to help correct. Yeah the insurance issue does stink, my advise is to fight everything and make sure you really do owe what they say you owe, we learned to never pay anything until we had enough time to do our own investigating, many times there were billing issues between the hospital and the insurance company.
Many days and nights were spent praying that she was being watched over and comforted as her small body was being repaired. Things are not always perfect and there will be more challenges in the future, but we have learned to enjoy every day and breath she takes. Our thoughts and prayers will be with you and your family as you start this special experience with Lilliana. If you need us, we will be here for you!:)

Hugs,
Mike Patton
IHH-VP

[Alli and Kyle Hicken]

Wow. You have a lot to look forward to in the next few weeks! Since you are from Idaho, I would look right now into getting Lilliana enrolled in the Katie Beckett program. It is a waiver for Idaho Medicaid that (at least for the next few months) is based on your child's diagnosis and not on income. They will help cover what your private insurance will not pay and will also pay for you to stay at the Ronald McDonald house and pay for your travel costs! They will likely not approve you until she is born and can be evaluated by one of the program nurses, but it would be worth looking into now since they will pay for things that happened for up to three months before you actually get approved. We just moved to Idaho Falls and are working on getting our son qualified... the process can be a pain, but the results are worth it if you can qualify! With your private insurance, I would call and ask for a case manager. Our case manager has been exceptional to help with the benefit explanations, fighting to get things covered, and catching some billing mistakes.

As far as hospital life, we spent several months there after our son Grant was born (he has HLHS, heterotaxy, and a whole ton of stomach and intestinal problems). If you have a laptop or can borrow one, I would highly advise it! We would blog and use our computers to connect to the outside world since it is not feasible to be on a cell phone fielding well meaning questions from friends and family. If you have acess to an RV or a camper, call the security office at Primary's and you can reserve a spot to park one for 30 days. It is in the parking lot and we stayed there for both of Grant's longest hospital stays. We showered inside the hospital, but always had the ability to go outside to make a sandwich, take a nap, and nothing beats being so close to your child in case you want to wander in during the middle of the night to check on your baby! I would also suggest that as long as you feel comfortable with it, leave to sleep. You will get no sleep inside the hospital during a night shift and while you child is in the ICU, she will have one on one care. Sleep was essential for dealing with the stresses of hospital life. Good luck on the journey you are starting! It is full of amazing experiences even if the days sometimes look dark!

Alli Hicken

[cmooredavis]

We had a thread about some hospital tip under General Chit Chat topic: Intro/Questions where a number of families posted helpful information.

http://ihhforum.org/forum/showthread.php?t=156

Please let us know if we can do anything for you!

[Bless her heart]

Oh, wow... thanks so much for your support, concerns, etc... I REALLY am so happy to have this forum to come to, even if I have the most supportive & intelligent husband! It really helps! I can't tell you how much I appreciate all of your comments. Thanks! I love your advice! I will share this info with my husband! :o

Love Jess

[SBAimee]

I agree with Alli - bring a laptop. And update your blog often if you can. I love being able to look back now and remember so many details that I otherwise would have forgotten. I'm now turing it all into a book that i know will be a treasure. Plus, the rest of us love to follow along and cheer every milestone.

Also, I recall packing my car full of books and projects and things to keep me busy because I thought I would get bored sitting at the hospital everyday for weeks on end. I suggest you bring a few things, but you will be amazed how quickly the days actually pass and how busy you will be. The only time I ever found that I really read a book or listened to music was every 3 hours when I went to pump.

Good luck. We'll be praying for you and Lilliana.

Aimee Hardy
Mom to Jack, HLHS, 13 months old
www.jacksonhardy.blogspot.com

[Heart Mommy]

I know I always say this.... I think it is because I feel so dang guilty, that I didn't do it.... If you can, find a way to have newborn (professional-ish) pictures done BEFORE the first surgery... I will help you find a photographer if you wish. I want those pictures so bad of when Gator was new and un-opperated on. Pictures and video are priceless... All of our mommies will tell you that. I think because it is a tangible thing to actually SEE your baby....

I know your not gonna feel great after having a baby, however... It was so important to me to be in one or two... And the whole family in one or two...

You will probably think I am a nut... That is just one thing I wish I could have back.