Update on HLHS/cleft/etc baby

soontobemomof6 · June 2014

Ok, so as y'all know my baby girl (I'm 25 weeks now) has hypoplastic left heart syndrome (HLHS), which by itself is a very serious collection of heart defects. It requires 3 open heart surgeries, the first within the first few days of life, to "re-route" the heart and help hold off a transplant til later in life. In addition, she has a cleft lip/palate, which by itself is fairly common and not too big a deal, but anything added to HLHS automatically makes it a bigger deal. In her case she'd definitely be looking at a gtube (feeding tube through stomach), possibly temporary trach, and we'd have to put off her lip and palate repair surgeries for an unknown amount of time until her heart is stable and her little body can handle more surgery, which would make her feeding and speech problems harder to overcome. And I do mean "little" body- we're getting ultrasound measurements of a month behind in some parts and she's still got 15ish weeks to go. The smaller the baby, the worse the chances with the heart surgeries. Yesterday we got some genetic testing back saying there's some things that look off (a small deletion on chromosome 22). The deletion doesn't fit a perfect already named syndrome, but it overlaps some with Digeorge syndrome if you are familiar with that. However, many of her missing genes they dont know much about- and dont know what additonal problems they'll cause or not cause, although we're fairly certain mental delays and poor immune system would be a part of that. Poor immune system = a sucky thing to have when you're looking at living the early months of your life in a hospital with a slew of surgeries to overcome. To top it off- no hospital in our state does the first of the surgeries she'd need. We're just adding her problems up and up and her chances to do well with the surgeries are dropping, as well as living a life where she isn't medically dependent on all sorts of things. At this point, unless things start changing for the better out of no where, we think we are going to take her home soon after birth to pass away with me and her dad and 2 brothers at home, instead of spending her whole life in the hospital with one surgery after another that she may not live through. Thank you for your prayers during this difficult time.

soontobemomof6 · June 2014

PS: we have named her "Liv," which means life. Her full name might be Lively since my name means lively and she sure is active and happy and safe in the womb where she can be as lively as she wants, but we haven't decided yet. We call her "Baby Liv" for now.

MrsHamon09 · June 2014

Please know I continue to pray for you and baby Liv. I have no words to express how sorry I am that you are having to face this road. You are a wonderful mother to her.

peanutbuttervibes · June 2014

So sorry you and your family are going through this. Big hugs and lots of prayers for Baby Liv.

LSN8308 · June 2014

That was beyond heartbreaking to read. I can't imagine what you and your family are going through with such a burden of a decision to make. I'm so sorry you have to go through this and my thoughts and prayers are with you and your family.

JD83 · June 2014

Hoping for the best for your Baby Liv, and for peace for you and your family. I can't imagine what you're all going through, but my thoughts are with you during this trying time.

aliciak316 · June 2014

I am so sorry you have to go through this. I've been thinking about you and baby Liv and I will continue to send you positive thoughts and prayers that things will start to take a positive turn. You are truly an amazing mother.

brittneyandadam · June 2014

I'm so sorry that you and your family are going through something so heartbreaking. Healing thoughts to you and baby Liv ♡

bf43005 · June 2014

Sending you tons of thoughts & prayers as you deal with this horrible situation and painful decisions. While the outcome may never be completely positive I pray that it's as easy and painless as possible for you, LO, and your family.

ashaw512 · June 2014

My heart goes out to you and your family. I pray for y'all and baby liv, positive thoughts in this horrible situation. I'm so sorry you have to go through this

Groxb · June 2014

My heart aches for you and your family. My prayers are with you all and sweet baby Liv.

JustCricket · June 2014

sending you lots of thoughts and prayers!

mapchick77 · June 2014

I am in tears for you at my desk. I am sending tons of thoughts and prayers for positive results ahead.

mrsdanielleM2010 · June 2014

Ladybug I am heartbroken for you - I will continue to pray for Liv every day, as well as for you and your whole family. Your next few months are going to be impossibly difficult, so I can only hope you find a way through. I'm here if you need to talk. Big hugs!

nilvero · June 2014

So very sorry that you are dealing with this. Sending prayers for you, your family and sweet baby Liv.

Shanadoll · June 2014

I can't imagine what you and your family are going through. You are absolutely amazing and please know that I am thinking about you and baby Liv. She is so lucky to have you as her mother

JackieB15 · June 2014

What and incredibly difficult decision to be faced with. You are an incredible mother. You and your family will be in my thoughts.

dinodna3 · June 2014

I am in tears for you at my desk as well. I will be praying for you, baby Liv and your family.

mrsH1112 · June 2014

I cant even imagine what you and your family are going through. As many positive thougths and prayers as I can send for Baby Liv. She has an amazing mom.

LTMama · June 2014

I am so, so sorry that you're going through this. So many prayers for you and your family.

biokitty42 · June 2014

I am so sorry you are going through this and have to make these decisions. My thoughts are with you and your family and baby Liv.

LoveOBX917 · June 2014

So sorry to read your news. That is so heartbreaking. I'll be thinking of you and your family. I adore the name you chose for her and the meaning behind it. Liv was actually a top contender for our girl names. T&P to you and Liv

gingerkid9989 · June 2014

((HUGS)) I am so sorry to hear about baby Liv. You are in my thoughts.

chardonnay24 · June 2014

I am so sorry you are going through this. I will definitely keep you and your family in my thoughts.

ap0wer · June 2014

My heart goes out to you, your family, and precious baby Liv.

SLWoody · June 2014

I am so sorry, I am in deep admiration of your strength and I am so sorry that you are in a position where you have to make this decision. I am thinking of you and your family.

Djcieply · June 2014

So sorry you are having to face this. My thoughts and prayers go out to you and your family.

hadeelb · June 2014

You are a very strong person, my thoughts and prayers are with you and your family!

MrsLaLaBug · June 2014

T&P's are with you. All the love and hugs to you, my dear.

sapphires-and-diamonds · June 2014

I am so so you're going through this. My heart breaks for you and your family. I will be keeping you in my thoughts and prayers.

ham0216 · June 2014

Sending many prayers & lots of love to you and your family during this time. I admire your strength - I can't begin to imagine what you are going through. Praying for a miracle for your sweet baby.

Soogerplum · June 2014

I'm so very sorry that you and your family are going through this. You're in our hearts!

Bella2425 · June 2014

Thinking of you and your family. Sending you many prayers of strength.

formerwigirl · June 2014

I really admire your strength and outlook while going through this. Your story brought me to tears today and I hope that things turn around for you. T&P for you and your family!

[Deleted User] · June 2014

I'm so sorry to hear that the updated news wasn't positive. I will continue to pray for baby Liv, you and your family.

Timscutie01 · June 2014

I will continue to pray for you, your family, and for Baby Liv!

MMason12 · June 2014

My heart goes out to you and your family! You are doing the best you can with a heartbreaking situation and I admire the strength you are showing. You and your family are in my T&P's!!

whataboutscience · June 2014

I can't even imagine what you're going through. Prayers for strength and peace for " your family and a miracle for baby Liv.

Also, I love her name and the attitude you have about your whole situation.