Lily Anne's NICU update

JaiMacreiberts

My OB agreed to discharge me today (even though my c-section was only yesterday) so that DH and I could go to Children's Hospital to be with our daughter. When we finally got to her, we met with the head of her cardiology team. Lily has a rare congenital heart defect called Truncus Arteriosus. This means she will have to have a fake artery placed in her heart that will have to be replaced several times as she grows older. She also has a hole in her heart that is apparently an "easy fix" and a valve in her heart that will have to be fixed some time in the future. Her heart is also partially backwards, but that is only strange, not dangerous. This condition can also be linked with calcium issues and an auto immune disorder, though we won't know those results for several weeks. 

She will most likely have her first surgery next week and will have to stay in the NICU anywhere from one month to three months.

I honestly don't know how DH and I are going to do this. Being away from her is agony, but the rest of our lives is two hours away from her. Life.cannot stop, even though it should. 

I wish I could  show you a picture, but I'm bumping on my phone. Despite her problems, she is absolutely beautiful. Everyone who sees her is amazed at how pretty she is.

I appreciate all the prayers and support. It means a lot to me that I can come on here  and tell my tale and for that, I thank you all!

I will update as I can...

~Lily's mom 

orriskitten

I am so sorry to hear this and am sending lots and lots of thoughts and prayers your way! Stay strong, mama, and gl with the surgeries to come.

Luvmy2sons

Sending you, your DH, and Lily Anne thoughts and prayers. Hang in there sweetie!

FlyHigh37

Thoughts and prayers!

vsalt31

I'm really sorry that your going through all of this. I'm sending lots of T&P your way. Is sounds like Lily is such a little fighter & I can't wait to see pictures of her! And when you can, try to take it easy. I know it's hard (people use to tell me the same thing), but your still recovering from a major operation. Please keep us posted. (hugs)

eav2c

I somehow missed your other post. I am so sorry and I know this has got to be so terrifying. Your precious little lady and you and your family are in my thoughts and prayers. 

DiamondDani

Lots of T&P's for you and your Lily!!!

Beener0514

I'm so sorry to hear this news but it sounds promising that the doctors can fix the health concerns. Babies are incredibly resilient so Lily will probably end up doing a lot better than her parents during the recovery process! I'll be thinking of you guys and sending lots of positive thoughts. Please keep us updated.

jenwet

Sending Ts and Ps to all of you. hang in there mama, it sounds like your baby girl is in excellent hands, so please try to take care of yourself too.

gisa886

Lots of prayers for strength for all of you! 

metucker

Good luck!

snoangel79

I'm sorry to hear this! My parent's neighbor's son has a heart issue and has valve replacement surgeries since he was little. He is a very active spunky lil guy! I will say prayers! The NICU is not easy. We stayed a little under a month and the NICU they were at (hospital they were born at was 1 and 1/2 hours away). We then transferred them to a level 2 NICU close to home when they were stable enough that actually let me room there with them (they had a beautiful maternity room I'd stay in and bring my milk down the hallway to my kids, this was something complimentary). I wonder if this may be something you could look into after her surgery. If she is stable enough to be moved closer to home. They move them in an ambulance with a nurse. It's just something to think about if it can be done it will save your sanity somewhat from the commute. Also, Ronald McDonald house I think helps with stuff like this. If you are in a big city which I assume you are for babies care this may be available to you to stay closer to your LO if the hospital doesn't have the capacity for you to stay some nights.

danandbethg

Miss Lily chose you to be her mommy because she knew you'd be strong for her. It is amazing how far neonatal medicine has come in the last 10 to 20 years. Sounds like she is in great hands. Keeping thoughts going your family's way.

Christina_Diane

I'm sorry you are going through this. Ts and Ps to your LO, you, and your family. 

MuckDiva

Thoughts and prayers!

FusionLMT

How scary! Sending you and yours the strength to get through every milestone to come.

rxbeth

I'm sorry to hear that she has a battle in front of her but she seems like a strong baby girl.  Thoughts and prayers for your whole family.  Take care.

jesbeth

Lily Anne and your family will continue to be in my thoughts. A NICU stay is very very tough, the best thing I can come up with is get on a schedule ASAP and ask for lots of help. Gas cards are especially useful, and having ready made meals waiting at home when you need them.

This link was great: 

https://preemiemomblog.blogspot.ca/p/what-can-i-do-for-my-friend.html