Why don't they care?

[buttercup_97140]

I am so frustrated! As some of you know, our unborn son has a hole in his diaphram that is letting some of his abdominal organs up into his chest, which causes his lungs not to grow. Well there is a fetal surgery that can help him, but since we just found out that he has a very small chromosomal defect, they won't even consider trying to help him. I have emailed all the fetal treatment centers in the US to see if any one of them has a different policy, which I am sure they don't, but it's just so hard to have someone tell me that my son is too "damaged" to try and help. KWIM? These are doctors who would have no problems aborting him, that they have time for, but they won't even consider helping him.
I totally know the Lord can change their minds or lead us to someone willing to help, but I also know that this could be the Lords will for our son. It's just hard feeling like the only real thing that I could have done to really help our son is now out of reach for us........grrrrrrrr, that's what I want to say....grrrrrr!!

Thanks for letting me vent....it's just so sad to know that everyone doesn't see each life as precious! Good thing the Lord does! That is a huge comfort!

Amber

[myjoyoverflows]

:cry: I'm so sorry, I can't imagine what you and your family are going through right now...I know it doesn't make everything all better...it doesn't make the problems go away...but God has His hand in this...He has a plan. HE created the beautiful little life that's growing inside of you....take comfort in Him...in the one that gave your son life...*hugs*

[jengrant]

I don't have any words, just hugs, I am sorry you are going through with this.

[Crissyanna]

I'm so sorry love.

If you need anything, let us know.

[luvmy4sons]

Oh, Amber. My heart breaks for you. Please know that I continue to pray. God sees you and He knows. He cares. And He is in control. It has to be so hard! I am so sorry. Many prayers for you dear sister.

[breezykc2]

I can't imagine...maybe if they won't listen...put in a killer article to the papers where some of the major surigcal practices reside and see if you get media support to sway them? ...and pray like mad!

[buttercup_97140]

LOL Breezy about the media....maybe I should call Oprah...she seems to get anything she wants...haahaa!!

Thank you all for your loving support, I feel like such a downer here...but I have never felt like that due to anyone, just my own complex....thank you all soooooooo much! Sometimes I just need to vent...I know the Lord is in control and I praise him so much for that...but darn, if it wouldn't be just easier to give me everything I wanted the way I wanted it.....wait, why would I need the Lord then? Ok Lord, I am getting it! ;-)

Amber

[love2bmom]

You continue to be on my mind & in my prayers. God's will to be done.

I agree... let's all rally and send Oprah a thousand emails..

[buttercup_97140]

Haahaa, so I just did a submission to the Oprah.com website. They have an area that asks people if they need a Harpo hookup to get something done. So I put down our story in so many words. Who knows if they will even care about one baby, but hey, if something does come out of it, maybe I will be able to witness to many people about the Lord and why it's not our decision to kill babies. ;-)

You ladies rock, thank you so much for your love and prayers and really good ideas!! LOL

Amber

[4HisGlory]

Amber I am praying for you during this time, I have no idea what you are going through but I do know our Lord only lets good come to us, and this is part of His perfect plan...even though it may feel less then perfect. Don't loose hope with the docs. My friend was having some difficulties with her pg and she started to go into labor at like 28 weeks and none of the docs would do anything to stop her labor and just told her to abort the baby because it wasn't going to live anyways...well they prayed and prayed and FINALLY a different doc ended up sewing up her cervix not realizing until he was already in the procedure how dialated she was..Long story short he said if would have known he wouldn't have done it...but praise God he didn't because they now have a healthy baby boy! A miricle from God. So don't loose hope...God will used this for His glory one way or another.

[myjoyoverflows]

Haahaa, so I just did a submission to the Oprah.com website. They have an area that asks people if they need a Harpo hookup to get something done. So I put down our story in so many words. Who knows if they will even care about one baby, but hey, if something does come out of it, maybe I will be able to witness to many people about the Lord and why it's not our decision to kill babies. ;-)

You ladies rock, thank you so much for your love and prayers and really good ideas!! LOL

Amber

You never know...just one baby could make the difference...or maybe even, you'll find that he's not the only one....either way, you did the right thing by at least trying! *hugs* Keep up the hope...you're awesome and strong, even though you may feel weak at times...it's very obvious that you are. And your son needs that!

[breezykc2]

Go girl! You know, sometimes just emailing all the places and writing an article can make you feel like you're doing something and ease your mind a little! Seems we need to try and feel in control in some way at times even though we aren't at all, God is! Prayers, prayers, prayers for you and your precious little guy.

[ChamomileFriend]

Praying for you! I am so sorry you are going thru this - let God's will be done.

[Godzgirl]

:cry: I'm so sorry to hear about your situation. Hugs and prayers are coming your way. [hug]

[JoyLynn]

Amber, I'm praying for God's will for your little one. He cares so much. [praywhensad]

[heartbeat] [hug] [heartbeat]

Joy [welcomewave]

[BlessedMommy]

That makes me so angry! Why does man think that he has a right to say who gets to live and who doesn't? By refusing to perform a surgery to save your son's life, they would be killing him, just as refusing to perform heart surgery on a down's syndrome baby would be passively killing him.

I sure hope that Oprah or someone can help you! Or that there's a fetal surgery center who can!

[pioneerchristianmomof3]

:cry: Praying for you! May the love of all your sisters in Christ wrap around you in a loving embrace! [huddle]

[believeNgrace]

Amber,

I can't imagine what you're going through. I'm praying for you and your little one. May you feel the love of Jesus wrapped tightly and lovingly around you.

[buttercup_97140]

Please pray!! I emailed the three other fetal surgery places that I know of, and the one in Texas emailed me back and said they need more information, so they didn't just say NO becuase of his defect. They totally may still say no, but at least they are letting me get a little bit farther than UCSF! Praise the Lord! Even if they say no, at least they aren't writing him off in a snap! :D

Thank you all for your support.....I feel a bit rejuvinated today! I don't want to get my hopes up, but hey, it's a start!

Amber

I have aanotehr ultrasound today, I will try and update you all soon!

[JeanineAnne]

Amber, continuing to pray for you!!!!
Keep us posted!

[pioneerchristianmomof3]

TTL! that they are willing to see about your son! Ill be praying they can help you! [lovesign]

[Threeredheads]

Keep us posted. I am just reading about this now. Your baby is my prayers.

[buttercup_97140]

So, I talked to the Doctor in Texas right before we left for the ultrasound...after many run arounds and medical terms, he said no to surgery for Noah...I asked him right away, if a chromosomal defect was an automatic turn-down, could they not have said yes right away? He did say that chromosomal defects are "contradictory to fetal surgery" because structures could look fine but not work fine. Still, at today's ultrasound Noah looked good. They only real manifestions of his defect we can still see is his hernia......Praise the Lord for that. His brain looks like it is growing perfectly, his heart (what they could see of it since he was turned funny) looked good, everything did, so that was a huge blessing!!

God is good!!!

Amber

[JoyLynn]

Amber, I'm so happy to hear that Noah is growing and developing well. Maybe God has a miracle in store for you. [prayer] Doctors don't know everything. I've heard many stories from moms who were told their baby was going to have big problems and turned out very healthy when they were born. The doctors may not do the surgery for you, but that won't stop God from bringing to pass His perfect will in Noah's life.

Thank you for keeping us posted on what's happening with you, Amber. I'll keep praying for you and for Noah. [hug]

[loveflag]

Joy [welcomewave]

[bizzebee]

I am continuing to pray for Noah and your family.

Melissa

[JeanineAnne]

Praise God he looks good!!!! Keep that ultrasound hidden in your heart, I am sure it was God's gift to you. You are doing a wonderful job!! We will continue to pray for you and Noah...hugs!

[love2bmom]

You are a true inspiration to me. With GOD ALL THINGS ARE POSSIBLE!!! I will continue to pray for guidance, comfort, healing & strength. Hugs!

[Aalena]

Amber,

That is wonderful news that Noah is growing good! I will continue to keep you all in my prayers. I pray there is a miracle in the future for you! God is so amazing!

[PATTIPEANUT]

Praying for you!

[buttercup_97140]

Not really an update, but we have another apt monday to see the doctor at the hospital I will probably transfer my care to. Since there is only one hospital in Oregon that has ECMO ( a type of heart-lung bypass machine babies with CDH sometimes needs) they usually transfer CDH patients there. We will be having another ultrasound....it seems so weird to have so many ultrasounds, although I love seeing Noah, I feel like I am cheating the system...LOL! We are going to be asking questions about their care compared to the hospital/clinic we go to now. I guess there is a small possibility that they wouldn't even consider putting Noah on ECMO because of his chromosomal defect, and if that is the case, we will stay at OHSU where we are now.
If the Lord brings it to mind, please pray that we have wisdom in choosing the right place to give birth.

Please feel free to ask me for prayers if they come to mind, I feel like I am always asking for prayer.

Amber

[luvmy4sons]

If the Lord brings it to mind, please pray that we have wisdom in choosing the right place to give birth.

Please feel free to ask me for prayers if they come to mind, I feel like I am always asking for prayer.

Amber

That is what the body of Christ is for! Most certainly I will continue to pray!