So, how do you come to terms with something like this? - Page 2

[ARCHIVED THREAD] - So, how do you come to terms with something like this? (Page 2 of 3)

Posted: 9/11/2009 7:33:20 PM EDT

[#1]

Quoted:
Got back from my daughter's first ultrasound. (Due in January)

Found out I'm having a baby girl, she is my first. I'm so excited.

Found out she has one of the more complex and severe congenial heart defects, called Hypoplastic Right Heart Syndrome. She will need emergency surgery immediately after birth. Only cure will be a heart transplant, and that's after a series of three stunt operations. One within a few days of birth, one at three months, and one between three and five years. I'll put it out there that I am on an emotional roller coaster. I feel like its my fault and there must have been a reason why.

Its alot to deal with and I am overwhelemed. Anybody have any experiences like this? If its too personal to share, feel free to PM. How do you find the peace to sleep at night? I'm lucky if I get 3-4 hours of sleep right now, and I know logically that there isn't anything I am helping by worrying cause there is nothing that can be done to fix it right now.

Mom just had a amniotic fluid draw today. We get to wait on results from that. The baby is very active and it is only 21 weeks along.

Damn.

My friend I am the father of twin 9 year old boys and my youngest son had to have open heart surgey at age 2 to repair 2 holes in his heart as well as valve damage. He also has scolleosis that will require spine surgey at some point the only thing I can say is to be strong and not to think the worst it will get better. I can tell you that the best day in my life was the day my sons were born and the worst was the day my son had his heart surgey. If you would like to talk about it PM me and I wil give you my phone number and I can recommend one hell of a good doctor/hospital in NC

Posted: 9/11/2009 7:35:31 PM EDT

[#2]

Friend of mine son was born with same thing MrFuzzyBunny has/had (whatever the tense should be).

You are about to be WOWWED!!! by the medical technology that is out there. His son had several heart surgeries, before he was 2.

HE IS A NORMAL ACTIVE 7 YEAR OLD!!! okay he is 9 now I do not see him much. If I did not know the back story, pain, suffering, etc that the family went through I would never have guessed.

Ask questions of the Docs. Have them explain what the heck they are saying. Do a bit of research, and ask questions as they arise.

Talk to your HR department, and boss now; you may need to take FML (Family Medical Leave). There may also be some support from your insurance, etc.

Hang in there!!!

Posted: 9/11/2009 7:56:45 PM EDT

[#3]

Please trust in God and his guiding hand in medical science. Doctors today do routine treatments that would have been miracles just a few years ago.

For your sake, accept that it wasn't your fault; you couldn't have prevented it. Also, accept that you're not going to be able to fix it by yourself either.

I grew up in a family of very independent country/farm people. If there was any way to get something done, we would do it ourselves. When my wife and I were having our first, she had a miscarriage at about 3 months. I went with her to the OB/GYN and held her hand while they were doing a D&C. That day I learned that I can't fix everything. I've never felt so small and helpless in my entire life. I couldn't make things better and all I could was be there to support my wife and move ahead. Turns out that was enough.

When the time comes, be strong but be willing to take help from everyone out there. Demand the best. Don't settle for "can't".

Posted: 9/12/2009 2:46:38 AM EDT

[#4]

Everybody, thank you so much for the comments. I plan on contacting several of y'all, but I think I am about to crash for the night.

Again, thank you for the prayers. I have drawn away from the Lord over the past several years, especially due to alot of questions that arose from my time in Iraq.

I think it is time I find Him again, and place this in His hands.

Posted: 9/12/2009 2:50:00 AM EDT

[#5]

Quoted:
Everybody, thank you so much for the comments. I plan on contacting several of y'all, but I think I am about to crash for the night.

Again, thank you for the prayers. I have drawn away from the Lord over the past several years, especially due to alot of questions that arose from my time in Iraq.

I think it is time I find Him again, and place this in His hands.

Remember he is ALWAYS there.

Posted: 9/12/2009 2:52:38 AM EDT

[#6]

Quoted:
Get a second opinion.

this

Posted: 9/12/2009 2:56:15 AM EDT

[#7]

Quoted:
I know this is going to sound...

Idiot.

Jsteensen, are the 2 Dr's you have seen regular OBGYN's? There are a lot out there that specialize in high risk cases. We had to go consult with one during our last pregnancy. Prayers out.

Posted: 9/12/2009 2:57:43 AM EDT

[#8]

Bah...Everything is going to be alright.

Just make sure you spend some time talking to her and giving Mom's belly all the kisses you can.

Posted: 9/12/2009 3:03:08 AM EDT

[#9]

Prayers sent.

If you aren't a member of chruch, find one.

It will help.

Posted: 9/12/2009 3:04:01 AM EDT

[#10]

Quoted:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.

Did you even read what he wrote?

Posted: 9/12/2009 3:28:54 AM EDT

[#11]

Quoted:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.

+1, in the most sincere way. Best to you and yours.

Posted: 9/12/2009 3:52:06 AM EDT

[#12]

Prayers sent.

Posted: 9/12/2009 4:26:40 AM EDT

[#13]

Trust in God and in the miracles that he allows medical people to work these days. Your daughter will come out ok, he has given her to you as she is, and she will be perfect in his eyes because that's how he made her.

OF course there is no way I can even think or fathom what you must be going through, but I'll be praying that your trust in God (from what I read it seems like you have a lot) is amply rewarded...and I know it will be. God pays back a hundredfold what we give him! He wants this little girl on earth to glorify him and you and your wife are helping this happen. He will take care of her....she belongs to him, and he will bless her and you and protect you all.

God Bless,

Bummer

Posted: 9/12/2009 4:36:10 AM EDT

[#14]

You and your daughter will be in my prayers.

Posted: 9/12/2009 4:51:44 AM EDT

[#15]

Prayers sent. Keep your chin up. Have Faith.

Posted: 9/12/2009 5:26:05 AM EDT

[#16]

Hello

I know what you are trying to deal with is difficult. My wife and I were in exactly the same position almost 12 years ago. We were told our unborn baby was going to be born with congenital heart defects (Hypoplastic Right Heart) and that we should consider terminating the pregnancy.

We got an opinion from a hospital and doctor that was know for dealing with congenital heart problems at the University of Miami (We live and Michigan and flew to Florida based on a conversation I had with a doctor I found online). Based on the advice of the Doctor in Miami we then went to an additional team of doctors at the University of Michigan Mott Children’s Hospital as they were ranked as one of the best in the field and were closer to home.

In April of 1998 my son was born with tricuspid atresia, transposition of the great arteries, ASD, VSD and pulmonary stenosis. These symptoms are better known as Hypoplastic Heart.

He had three open heart surgeries, one at 10 days old, one at 6 months old and one at 2 years old. My son is now 11 years old and just started 6th grade. He is a relatively normal child who even plays hockey.

No one can tell you what decisions to make or promise you that everything will be ok.
There are hospitals (particularly Universtity Hospitals) that have teams that specialize is pediatric cardiology and these types of issues. I would recommend finding one and getting their opinion.

I wouldn’t wish what we went through on anyone. But I thank God everyday for our son and the strength he gave us to endure.

Our prayers and thoughts will be with you. Please PM me if you would like any additional info.

Posted: 9/12/2009 7:43:55 AM EDT

[#17]

Pray, Pray, Pray.

My brothers son was supposed to be born with Downs Syndrome
a lot of prayer later her was born normal.

My sister was Dead in the womb a lot of
prayer later and she was born normal.
(though she spent over 10 months in the womb)

I was supposed to die at 1 month
Prayer and I made it just fine
(that was 45 years ago)

I don't even try to explain the miracles I've seen I just accept them.

Posted: 9/12/2009 7:55:03 AM EDT

[#18]

Your best bet is to make sure you have good health insurance, work extra hard to make the money to pay for the costs (2-3 jobs 100+ hours a week) and start selling non-essential items now, so that you have the cash on hand to pay unforseen incidentals in the near future.

As long as you have a job, money, credit or things to sell most issues can be resolved, its really only the poor people who have lots of trouble with sickly kids.

Posted: 9/12/2009 8:25:27 AM EDT

[#19]

Good friend of mine's daughter had multiple heart surgeries beginning in the womb and ending after age 2. She's a happy and healthy eight year old now with no major long-term problems.. I know this doesn't always happen, but we'll pray your daughter has a similar result. Also pray for the Doctors and Surgeons, that God guides them in treatment and surgery.

Posted: 9/12/2009 8:42:53 AM EDT

[#20]

Prayers for you and yours.

One day at a time, and every day is a gift from GOD.

We are not guaranteed another breath, we take it for granted, but any one of us could drop dead before I finish typing this.

I have seen miracles, and I have seen young ones go home to be with Jesus.

We just experienced our first miscarriage this year, after 4 healthy girls, and the emotions that we went through are hard to describe. We are now expecting #5 in Feb, and yes we worry about every one.

Like a couple have suggested, put the worry in a box and give it to GOD. You and your wife need strength, for each other and your little girl.

In the big scheme of things, a lifetime is but a moment in eternity.

Posted: 9/12/2009 8:54:22 AM EDT

[#21]

Challenges like this make all the things we normally complain about pale in comparison.

We are blessed to have the finest medical system man has ever known, and you have the support of all of us (as trivial as the latter may seem)

You, your family and daughter are in our thoughts.

Posted: 9/12/2009 9:05:06 AM EDT

[#22]

Prayers sent.

Hang in there and be strong for your wife and your baby daughter.

We're all hoping the surgery will be successful and she'll be a healthy, happy child, JSteensen.

Posted: 9/12/2009 9:14:06 AM EDT

[#23]

Quoted:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.

Yeah great idea Nancy. Just kill it because it might make you feel emotional to care for your child.

You are a woman with womanly emotions not wanting your womanly self put through this right?.

Posted: 9/12/2009 9:25:10 AM EDT

[#24]

Dude, be grateful for what you have and just cope. All life is precious. Love her unconditionally.

Posted: 9/12/2009 9:27:20 AM EDT

[#25]

Quoted:
Every child is a blessing, no matter the difficulties or issues

To the OP, one of my kids has a genetic disorder. The amount of joy he provides to us is irreplaceable. I honestly believe the Lord gives us these challenges because he knows we can handle them, and they give us a chance to be better people.

Hang in there, love her, she needs you!

Same here. Couldn't say it any better.

My old son was born with and will live the rest of his life contending with a genetic disorder. I never cried so much in my life when we got the news, now 9 years later I can't begin to describe the love I have for that boy. I thought I knew what true unconditional love was, boy was I wrong, but I sure know now.

I know it seems like your world is caving in OP but just know that you have beautiful experiences ahead of you as a parent. I will pray for you, your family and your precious baby girl.

Posted: 9/12/2009 9:32:21 AM EDT

[#26]

the strives made in Pediatric Cardiology in the past 10-15 years have been extremely dramatic. start your consults now.
i have worked on several horrific peds cases that turned out wonderfully.

Good Luck and prayers.

BTW,
Ultrasounds can be very, very misleading!!!!

Posted: 9/12/2009 1:32:29 PM EDT

[#27]

Stay strong for your daughter... she's going to need you.

My cousin went through something like this; she was born with GI, lung, and heart deformities; the docs gave her a few weeks to live... she's now 16 1/2, and though she's been through all kinds of hell, multiple surgeries, and is waiting on a heart-lung transplant (oh, and having three cardiac arrests in the past two months), she's an absolute genius and an inspiration to everyone in our family.

Posted: 9/12/2009 1:50:27 PM EDT

[#28]

Quoted:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Well, you're pretty much a jerk, and what you suggest is preposterous, myopic, cruel, and also bad medicine, nevermind the fact that the baby's condition in the OP is surgically correctable...

Accompanying a life with love

When a baby cannot survive long after birth, prenatal consultants help mothers carry their child to term and bond naturally, avoiding the psychological and physical traumas of abortion.

It was a typical busy day at Gemelli Hospital in Rome when Claudia, a pregnant young woman in her third month, entered Dr. Giuseppe Noia’s office. She was worried after doctors had told her that her baby might be born without kidneys. If so, she wanted the pregnancy terminated, and fast.

Dr. Noia, who heads the hospital’s Center for Prenatal Diagnosis and Therapy and deals with problematic pregnancies on a daily basis, immediately offered to run thorough tests. He confirmed that the baby was missing both kidneys. Unable to urinate, the baby would not develop functioning lungs and would die shortly after birth.

Claudia saw no other solution than an abortion. Dr. Noia suggested an alternative: “accompanying” the baby.

“Accompanying the baby?” Claudia asked, confused. “Abortions,” Dr. Noia explained, “can cause the mother serious psychological and physical trauma. It’s called post-abortive syndrome.” Accompanying the baby meant monitoring the pregnancy with routine procedures and treating the baby with the same care as a normal newborn throughout its brief life.
...
“I can’t do this,” Claudia said, and left.

Nine years later, in 2001, she returned to Dr. Noia’s clinic. “Do you remember me, Dr. Noia?”

The clinic sees hundreds of people every day, and Dr. Noia had to offer her his apologies. She reminded him of her story, and said: “That day, when I left, I was angry with you. I thought you put your Catholic views ahead of my concerns and the concerns for my unborn daughter. I thought you were trying to undermine my autonomy as a woman.”

“Claudia, we don’t force anyone here,” Dr. Noia said, “and the proof is that you had the abortion you wanted.”

“I came to tell you that you were right,” Claudia interrupted him, explaining how, after her abortion, she had fallen into a depression so severe that she couldn’t face another pregnancy for a full nine years. When she finally conceived, she had a miscarriage. “Now, though,” she concluded, “I’m pregnant again.”
...

Link

Thoughts and prayers are with you and yours, OP.

Posted: 9/12/2009 1:57:12 PM EDT

[#29]

Man just love her.

As others have said heart surgeries are amazing these days. I've gout a cousin who had what sounds to be alot like this and she's had several heart surgeries when she was young. She's 18 now and she's perfect. You never know whats going to happen. the best thing for you to do is hang on for the ride and pray.

Best wishes to you and yours. Let us know how everything goes with birth and all.

Posted: 9/15/2009 1:15:03 PM EDT

[#30]

I got some good news - the amniotic fluid draw came back as no further problems with the baby.

She has a consult with a pediatric cardiologist here soon.

Thanks for all the well wishes people.

Stress and long days at work - I'm sicker than a dog now.

Posted: 9/15/2009 1:25:09 PM EDT

[#31]

Quoted:
I got some good news - the amniotic fluid draw came back as no further problems with the baby.

She has a consult with a pediatric cardiologist here soon.

Thanks for all the well wishes people.

Stress and long days at work - I'm sicker than a dog now.

Prayers sent

Your little Girl will be a fighter as soon as she takes her first breath.

Posted: 9/15/2009 1:26:03 PM EDT

[#32]

A friend of mine's daughter is a similiar boat. Heart surgeries, etc.

She's 11.

Don't ever give up hope. Ever.

Posted: 9/15/2009 1:30:24 PM EDT

[#33]

Prayers sent.

Posted: 9/15/2009 1:30:52 PM EDT

[#34]

Quoted:
...I think it is time I find Him again, and place this in His hands.

That's a good idea. Only His hands are big enough.

Posted: 9/17/2009 12:16:11 PM EDT

[#35]

She sees the pediatric cardiologist tomorrow.

I'm praying for some good news.

Posted: 9/17/2009 12:24:18 PM EDT

[#36]

Wow, very sorry to hear. Best of luck and prayers your way.

Posted: 9/17/2009 12:27:06 PM EDT

[#37]

All 5 of my kids were supposed to be mutants, all 5 are fine.

the problem with ultra sounds is that the doctor is looking at something thats not finished yet.

Posted: 9/17/2009 12:41:42 PM EDT

[#38]

I'm sorry to hear about your girl.

One of my best friends growing up was born with a major heart defect. He had over 18 surgeries by the time he was 2. Eventually the parents said that if God wanted their son to live, he would let him live. He is still alive today, over 20 years later. Probably one of the nicest guys I have ever known and that is saying a lot.

A nice guy who lives down the street has a cute son who is about 1 or so now. He has an artificial heart. its kind of unnerving to see this big valve pumping under his skin. The few times I played with him he was always just so happy and smiling. It was almost like he knew how fragile life was and he wasn't going to spend it being sad about something he couldn't control anyway. His dad told me that it helped him too.

It may not be much solace, but the few people I met with those problems tend to be the most positive and caring individuals. More so than anyone I met with a normal heart.

Posted: 9/17/2009 12:43:29 PM EDT

[#39]

Quoted:

sorry

Same here.

Posted: 9/17/2009 12:45:08 PM EDT

[#40]

Quoted:

Quoted:
I know this is going to sound preposterous to many people here.... but has she considered an abortion? I do not know where you and your families opinions fall concerning this, but i just don't think I could put myself and my child through those operations (both financially and emotionally).

Edit: Whatever you guys plan to do.. I will send some good thoughts your way and I hope everything turns out for the best. You have a community of people here if you need anything.

Have you considered a post birth abortion for yourself?

OP, I'll be praying for you and your wife and your unborn girl. Whatever the outcome, you need to be as one on this. Singly you might not be strong enough, together, your strength becomes hers and hers yours. Talk to your parents, pastor [if you go to Church] and maybe some people that have gone thru this.

So true!

Posted: 9/17/2009 12:46:39 PM EDT

[#41]

Quoted:
Guys... I was just posting a possible option as everyone in this country isn't pro life. I mean no disrespect towards his family and keep your personal attacks towards me out of this thread. Send them to me in PM if you must but don't clutter this thread up with that stuff.

I just showed some of my non shooting friends this thread and they send their thoughts and prayers as well.

What you was totally classless!

Posted: 9/17/2009 12:53:07 PM EDT

[#42]

Quoted:
Do not blame yourself, and do not do her the disservice of thinking less of her or yourself for a condition. Everyone in life has problems... as many problems as he has, any of us would be proud if our children achieved what Stephen Hawking has achieved. You will do everything you can, and you will love her, that is all that is necessary. My prayers are with you and your family.

+1 stay strong

Posted: 9/17/2009 1:01:12 PM EDT

[#43]

To the OP, I'm sorry you're going through this but don't blame yourself or look for reasons why. Things happen, the body is massively complex and things go wrong - that's all there is to it.

Deal with it, support your wife and love your child no matter the outcome.

I know what you're going through, been there myself.

Posted: 9/17/2009 1:06:55 PM EDT

[#44]

Hang tough Bro. My prayers are with you and your wife.

Posted: 9/17/2009 1:31:41 PM EDT

[#45]

Quoted:

Quoted:
Keep your chin up and think positive thoughts...You will need to be strong for your wife and your daughter.

I tend to box up emotions like this in front of her....she asked me if I really cared today, because of my demeanor (I come off cold when exceptionally stressed.) about it...I assured her I did, but needed time to take everything in.

We had three miscarriages. It was very difficult for both of us. I didn't talk about it and she wondered if I even cared, even though I listened intently when she was talking about it. I actually had to make myself talk through some of the feelings that I was having to reassure her that I did care, several times over. You may need to do the same in the coming months.

I do not understand why Clara, Christopher, and Rose were not born into this world as my children, but I do understand that God is sovereign over all things, and His purposes are good. I have a lump in my throat after typing that sentence.

We were blessed with a son, who just turned two, and have a bun in the oven.

I can only offer prayers on your behalf, and a sincere congrats on the little one. Enjoy her. It is my prayer that she has a long and happy life.

Posted: 9/17/2009 1:31:54 PM EDT

[#46]

God be with you, and your family.

Posted: 9/17/2009 1:39:53 PM EDT

[#47]

Prayers sent.

Posted: 9/17/2009 5:48:48 PM EDT

[#48]

I am very sorry to hear this news. It is way too early to panic though. When my wife was pregnant with our third child we had some bad ultrasounds. We were told our child would never walk, never talk, and not have a personality. I have never had a feeling quite like the one I had when I left that meeting.

That was about 8 years ago. Our youngest daughter walks, never stops talking, and has a personality for sure. Is she absolutely trouble free? No. She is doing fine in regular 2nd grade though.

No one can predict what will happen with your daughter as she develops. Had I known how my daughter would turn out I could have saved my self a lot of heartache.

You will find you are much stronger than you know. So will your wife. You need to partner up with God. Sometimes that funny feeling in the center of your back you feel when you are beat completely down by life is God holding you up by your shirt.

You and your wife need to stick together like glue. Give your worry to God. Pray hard. You all will be fine even though it is hard to see how at this moment.

Here is a pic of my girl who was going to be severely handicapped, without any personality, no real mental capacity, no real chance at life, heading off to school this year.

Posted: 9/17/2009 5:55:17 PM EDT

[#49]

Quoted:

1) Congratulations on your baby. She is yours and she is special

2) it's NOT. YOUR. FAULT. it's a birth defect. I have met people born without eyes, legs and arms. They are all AMAZING and do things you could never dream of them doing. it's how they are born and it's "normal" to them. They are not limited. I am 6'5" and was a professional athlete, I got my ass beat to death in a game of wheelchair basketball by some guys either born without, or missing legs. halfway through the game me and my team were like "F it, we're cheating. " we ditched the wheelchairs and played full legs.

we still lost

3) Heart surgery is *amazing* today. our neighbors kid was born with a terrible congenital heart defect that sounds like yours, several surgeries over several years. he also was born with most of his insides actually outside his body. they were pretty sure he wouldn't live.

today: totally normal although a little small, but tough as freaking nails. I watched him whip some kids ass in wrestling last year that was nearly twice his size. he wrestles up two weight classes and DOMINATES.

he's also good at baseball.

4) if the worst happens. the very worst, and she passes away. you will have given a very special spirit a body for a short time and enabled her to be resurrected at some time and live with you again. You will have known and shared some time with a special person for a short period and she will always be your daughter. Forever.

pray, take time with your wife, and deal with challenges as they come. My brother and sister in law had a baby that was born without a brain stem. She lived a very very short time. It was sad but they know her and feel blessed to have met her for a short time.

prayers are with you and your family man.

I can't even try to say it better than this.

Prayers sent, OP.

Posted: 9/17/2009 5:57:58 PM EDT

[#50]

Believe it or not a Ranger buddy of mine has a daughter with the same thing. She finished the last of any planned surgeries about three months ago and is doing great. It's been real rough on hi but his daughter is fine. Keep your chin up brother. Prayers en route.

[ARCHIVED THREAD] - So, how do you come to terms with something like this? (Page 2 of 3)

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