# Personal SHTF Our new son has heart defects



## ne prairiemama (Jan 30, 2010)

He is scheduled for his 1st surgery on March 4th right after he turns 1 month old. We are folks who usually don't go to the doc unless a limb is falling off or someone can't breathe etc lol.This has thrown us into a whole new world of specialists,travel for multiple appointments, tests on our tiny baby and all manner of scary things to face.

I was so thankful for the pre made meals we had in the freezer (for some reason i felt compelled to make more than normal this pregnancy to tuck away for after baby... Dh has never taken off longer than the time i was in the hospital or actually having the baby before but this time he had taken the week off... we ended up spending it in the NICU..

At any rate this brings us into a whole nother level when it comes to tryiung to be prepared! I wouldn't mind advice from anyone who has faced similar and how to prep when there are serious ongoing medical issues...


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## Wendy (May 10, 2002)

I will say a prayer for your baby. 
I spent 4 months with my first kids (twins) in the NICU. What a roller coaster ride. Just focus on your baby. If someone offers to help, let them. Let them know a nice meal would help out. Whatever you think you may need. House cleaned, animals cared for, etc.


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## hoggie (Feb 11, 2007)

No practical advice for you I'm afraid - but you'll be in my thoughts and prayers


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## where I want to (Oct 28, 2008)

Yes- if someone offers to help, have a list of things in your mind that you need done and tell the person. Specifically. 
Also make a friend of the hospital social worker- she might have a list of resources too.
You might keep a small bag in the car so that you always have some personal needs with you in case you need to unexpectedly stay.
Have your phone charger with you.
You and your little one will be in my thoughts. There are so many advances in treating infants.


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## unregistered29228 (Jan 9, 2008)

Congratulations on your new baby! I'm sorry he has health issues, and will pray that the doctors fix him up good as new.

Our fourth baby had some issues at birth and spent a week in the NICU. Our first 3 were robust and healthy at birth, so it took us by surprise and we weren't as prepared as you are. If it hadn't been for neighbors and friends I don't know what we would have done, so I agree with the others - let people help you. 

And congratulations on being prepared for this unforeseen problem!


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## Ohio dreamer (Apr 6, 2006)

Congratulations on your new blessing!! Looks like this one is starting off life by teaching Mom and Dad some new skills.

Be willing to ask for help. Sometime people don't know when to jump in and help out. When you can't sleep and have 1,000 thing running through your head, grab a note book and start writing. Often you will see it is a list of chores that need done....now you have a place for you volunteers to start!


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## Billie in MO (Jun 9, 2002)

Oh Sarah, I am so sorry. You know that if I was closer I would help out. As others have said, focus on the baby, grab a notebook and start writing things down (not just for things that need to be done at home but also what the doctors say.....sometimes you can forget when you are worried).

What about the other kids? Are they all going with you or staying at home? Keep them informed about what is going on and how serious it may be. I know your older boys will take care of the little ones. Tell them how much you appreciate that (I know you already do).


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## bluemoonluck (Oct 28, 2008)

My niece was born with a hole in her heart and a crimped aortic arch, requiring open heart surgery at 6 days of age. She had to be put on a heart-lung bypass machine and have her temp dropped down for several hours  My sis and her DH stayed with the baby at Children's Hospital in DC for 3 weeks - thankfully they were able to take turns sleeping at the Ronald McDonald house, so the parent who wasn't in the baby's hospital room that night could go get a decent night's sleep. 

Because of the fact that they were an hour from home, prepared meals didn't help them any. They pretty much had to eat in the hospital cafeteria or at local restaurants, because they couldn't do much food prep where they were.

Their prep was a credit card to buy meals with, and cash in the bank to pay it off. They were also fortunate in that they have friends who live near them who were able to swing by their house every day to feed their cat and bring in their mail. They also set everything up (all bills) thru automatic bill-pay so they didn't have to worry about paying something late while they were wrapped up in their child's medical issues.

My niece is a success story. She's 16 months old and a little spitfire! She still sees the cardiologist every 6 months, and likely will for at least the next 17 years or so, but she is a normal active healthy smart toddler


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## jessimeredith (Sep 12, 2004)

My nephew just went through open heart surgery for a hole in his heart and a "misplaced" vein, literally...3 days ago. They knew about it at birth (he is now 4). The docs and his parents opted to wait until now as they all felt that the surgery was too risky for such a little guy (at birth) and monitored him closely. Not that it wasn't risky three days ago, just less risky. He's done beautifully and is already off all the tubing. The docs are already talking about release home in a couple of days.

The point of all of ^that^ was to open up another option, if possible. Sometimes it's better to wait, if it is feasible. My sis and BIL had 4 years to prepare. 

Disclaimer: Nephew is not a "normal" pediatric heart patient...the docs have always been surprised at how healthy, active and how much of a normal kid he is. Looking at him, how he is, you'd never ever guess that he has/had a serious heart condition.


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## jamala (May 4, 2007)

Praying for you and that sweet baby. My youngest was born at 24 weeks and we spent months in the NICU. The biggest "prep" that helped when we got home was keeping a bag packed and actually in the car. Several times he stopped breathing on us and we had rush to the hospital 30 minutes away and once it resulted in a emergency flight out of state with him. I was so thankful for that packed bag as I didn't have to return home and could stay with my baby. We also kept bags packed for my older kids so that they could go with grandparents and have everything they needed.


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## wally (Oct 9, 2007)

PM sent.


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## Annsni (Oct 27, 2006)

Praying!! My brother and sister-in-law went through this although my nephew had surgery almost immediately after birth because of Tetrology of Fallot. He's now a happy, hearty, healthy 9 year old who has been released from his specialists and now can go on with life!  Praying it's the same for your little one!


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## blaundee (Nov 3, 2012)

Prayers  

As for continuing to prep- dont stress about it, that will just make matters worse. I have no idea where you are in your prep plans, but if you have at least 6 months worth of preps for your family, and are on your way to being self sufficient, then I say dont concern yourself too much with prepping- just add to the stores as you are able.


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## Danaus29 (Sep 12, 2005)

I've never faced anything similar but I want you to know that I will be praying for you and your baby.


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## backwoods (Sep 12, 2004)

Congratulations on your baby, and will be praying for you all. I might suggest along with keeping bags packed, include some snacks, cheese cracker packs, chocolate bar (boosts morale)a book, magazine,etc. For the other kids, pack some dollar tree toys, new coloring books, puzzles, dvd, as a diversion for them. Best wishes to you all!


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## ne prairiemama (Jan 30, 2010)

Thank you all so much for your kind words, thoughts and prayers!! 

Backwoods thank you for those ideas, especially the chocolate lol.

The other children will be staying home with a friend of ours so that they (well the big ones lol )can take care of the animals and be in their own surroundings. I think on payday I will try to get some colorbooks and such for them to be occupied with here though!

The hospital that our little guy has to be at for surgery is a children's hospital about 130 miles from home and if everything goes perfectly then we will be there 4-7 days. His surgery this time is for coarctation of the aorta. He also has a bicuspid valve that will need replaced at some point.  I'm so glad they can do the surgeries though even though it scares me to death to have them do it.

bloomoon the prepared foods didnt help dh and i since the NICU we were at is 75 miles from here but it was great for the kiddos that were home. (My friend doesnt really cook lol. The dc can cook just fine but it made things easier for them  ) 

jm I wish we had the option to wait  I'm glad you nephew is doing so well!!

Billie I know you would!!

Thank you all for the practical ideas and the encouraging stories!


I know I missed some of you but I need to stopfor a minute and tend to little folks.


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## Annsni (Oct 27, 2006)

When my daughter was in the hospital for a month in New York City (about an hour drive from home) almost two years ago, here are a few things that really helped me:

Dress comfortably and even bring a pair of slippers to wear around the room. It's going to be your home away from home for a while so might as well make it comfortable!

If anyone offers anything, take them up on it. If someone seriously asks for what might be helpful, ask for gas cards or some money for food. It sounds crass but we figured out that between gas, tolls, parking and food, we spent over $60 a day. That doesn't count the medical bills. Now when people ask me what they can do for a family with someone in the hospital, I always tell them that food is helpful, cash is essential and I now will give the family a card telling them I'm thinking of them with $100 in tens. 

Pack a bag of easy food. I tried to get out of the room each day once to just get outside to get some air and grab a bite from a food cart or the cafeteria but it was good to also have trail mix, granola bars, fresh fruit, cup-a-soup and veggie chips in the room with me.

Get a book or a Kindle. When my daughter was in the hospital for her first hospitalization, I was doing SwagBucks to earn enough to get a Kindle and when I came home one night, there was a Kindle on the doorstep. A friend had bought it for me!! I was floored but what a blessing! I was able to download a ton of books and just carry the small Kindle with me. 

Bring some other way to communicate with the outside world other than a phone. If it's a web enabled phone, fine but I found a lot of sanity just being able to surf the web, update friends on Facebook and Caring Bridge or even just check up on the news. The TV was too much for my daughter so it was all on my laptop. A tablet would be even better!

Allow someone to spell you every few days so you can get home and rest. I was able to come home each night to sleep in my own bed because there was just no where at the hospital for me to sleep (no cots or recliners) and we live an hour away. So I'd leave around 11:30 or midnight and head home, go to bed, get up at 4:30, shower and run off again to get to the hospital by 6 am. This left me really exhausted and so every Saturday, my husband would go in to stay with her while I stayed home, slept in, took a bath, tidied, spent time with the other kids and organized stuff like food and laundry. It was a lifesaver for me!

Drink plenty of water. I found that I neglected this and would get headaches and not feel well. I finally brought a big bottle that I filled up with ice and water at the hospital. It helped a lot!

Make friends with the nurse. Our nurses were amazing and I made sure to be very friendly and attentive to them. It paid off in spades!!

I pray that this will be a short time of crisis for you guys and that the doctors do amazing work by the hand of an amazing God. ((HUGS))


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## thesedays (Feb 25, 2011)

I used to work with a man who was born in 1985 with a heart defect that had to be repaired the day he was born; he never told me exactly what it was, and I never asked, but based on the information he gave me, it sounds like he had transposition of the great vessels. We're still in contact via Facebook, and he got married a couple years ago and is doing a pediatric residency. He had several major operations and lengthy hospital stays, the last when he was in high school, but for the most part, he's lived a very normal life.


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## jadedhkr (Oct 25, 2004)

Don't forget the Ronald McDonald house. There are also discounts given at some hotels, just ask for the medical rate. When our son was first diagnosed with leukemia, I spent a lot of time in the RMH and some nights in discounted hotel rooms.

My mother came out to live with us for nearly 6 months and help with the other children. Such a blessing! But now I'm playing catch-up on my preps since she left. I am still travelling weekly to the cities for his chemo appointments and that gas really adds up, so I second the gas cards. When someone asks how they can help, say gas card!

Good luck, I'll be thinking of you and your little one now too


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## Annsni (Oct 27, 2006)

jadedhkr said:


> Don't forget the Ronald McDonald house. There are also discounts given at some hotels, just ask for the medical rate. When our son was first diagnosed with leukemia, I spent a lot of time in the RMH and some nights in discounted hotel rooms.


I knew I forgot something!!  Unfortunately, my daughter was 21 at the time so we weren't eligible for RMH and they were also quite a distance from the hospital but what a great service.


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## nostawmama (Dec 29, 2011)

My goddaughter had the same surgery April 1st, 2011at 10 days old. Can't offer advice but hugs and prayers for you all. 

(She is doing awesome btw!)


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## TheMartianChick (May 26, 2009)

I have no advice for you, but I will pray for your family. Wishing your little one a speedy recovery!


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## Cascade Failure (Jan 30, 2007)

Annsni said:


> When my daughter was in the hospital for a month in New York City (about an hour drive from home) almost two years ago, here are a few things that really helped me:
> 
> Dress comfortably and even bring a pair of slippers to wear around the room. It's going to be your home away from home for a while so might as well make it comfortable!
> 
> ...


Best post yet, especially the "allow someone to spell you" part. You are useless to your kid, your family, and yourself if you can't function effectively. Awake does not equal effective.

Another pm sent.


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## janetn (Apr 26, 2012)

Put a cooler in your car with some ice. Stock up at the store with some drinks and fresh veges and deli stuff. It will save you a ton of money and help keep you feeling better. The vending machines and hospital cafeteria food gets old real fast. 
Bring a pillow for the room its comforting to have your own pillow for some reason.
Ronald McDonald houses are great.


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## ne prairiemama (Jan 30, 2010)

I didn't mind the food too badly while we were in the NICU at the 1st hospital but the price of the cafeteria adds up very quickly!!

We are hoping for a room at a place similar to RMH if there is room. I'm nursing Isaiah and won't be leaving him much at all but dh will need a bed etc. 

From what I read I think the room he will be in after he gets out of the PICU will have a small fridge?! That would be great!!


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## Pam6 (Apr 9, 2009)

I have been praying and I will continue to pray for your family and your new little one.


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## ne prairiemama (Jan 30, 2010)

Thank you so much! 

I'm working on packing bags today and making lists of things we need to get on payday to take along. It feels so unreal that in 1 week we will Lord willing, be up at the Children's Hospital....

We have 4 nubian does due to kid anytime after the 1st so that is adding a little extra to the prep work and stress. (nothing compared to the surgery stuff but still) My big boys are capable but theres already alot to be done.... 

Need to make a grocery list for home and one for us for the cooler  

They said I could bring extra jammies, a blanket and such for little man and that he might have to use a bottle temporarily.... so I'm trying to get a bag ready for him too, aside from his regular diaper bag.


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## jamala (May 4, 2007)

Praying for you and your family


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## CottageLife (Jul 20, 2009)

Thinking of you, and your family.


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## Ambereyes (Sep 6, 2004)

Take care of yourself mentally and physically, stress is huge in your situation. 

Sending all good thoughts for you, your family and your beautiful baby.


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## ne prairiemama (Jan 30, 2010)

They moved his surgery to 10:30 am Monday instead of 3 pm for anyone who wants to pray during that time.


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## Common Tator (Feb 19, 2008)

I'll be praying then. You don't list your location. What time zone are you in?


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## Billie in MO (Jun 9, 2002)

Common Tater, she is in the central time zone.


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## Common Tator (Feb 19, 2008)

Thanks! Billie!

So if you are the praying sort, lets form a giant prayer chain for this family and this baby! Monday, at 11:30 Eastern, 10:30 Central, 9:30 Mountain, and 8:30 Pacific!

Folks around the world, you are welcome and encouraged to join in! Please calculate your time so we can all be in sync! We CAN make a difference for this little guy and this family!
NE Prairie Mama, would you like to share this post in Countryside Families? There are plenty of believers there, who would be happy to pray for this baby. Would you like for me to share it for you? I know you have your hands full, and I'm happy to do it for you!


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## jamala (May 4, 2007)

We will be praying throughout surgery.


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## Mma800 (Feb 27, 2013)

Prayers are coming to your family from Boston!


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## ne prairiemama (Jan 30, 2010)

Thank you all so so much!! 
Yes please feel free to share it for us Common Tator!!
I am teary eyed with all the kindness and care that you all have shown. 
Need to take care of baby, but wanted to stop in to thank you


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## Becka03 (Mar 29, 2009)

We had a friend with a baby that had heart defects I forget the name of the condition- do you know what the name of the condition is? I will be praying for you! and baby


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## Guest (Mar 1, 2013)

Praying for your little one...


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## ne prairiemama (Jan 30, 2010)

Becka he has what is called a coarctation of the aorta and a bicuspid valve. The coarc is what this 1st surgery is for.


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## mzgarden (Mar 16, 2012)

Praying in Ohio and will be in the prayer chain Monday.


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## unregistered65598 (Oct 4, 2010)

Praying the surgery went well.


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## Sonshine (Jul 27, 2007)

jadedhkr said:


> Don't forget the Ronald McDonald house. There are also discounts given at some hotels, just ask for the medical rate. When our son was first diagnosed with leukemia, I spent a lot of time in the RMH and some nights in discounted hotel rooms.
> 
> My mother came out to live with us for nearly 6 months and help with the other children. Such a blessing! But now I'm playing catch-up on my preps since she left. I am still travelling weekly to the cities for his chemo appointments and that gas really adds up, so I second the gas cards. When someone asks how they can help, say gas card!
> 
> Good luck, I'll be thinking of you and your little one now too


 I was going to suggest the Ronald mcDonald House. Ask the social worker at the hospital if there are similar places close by. I've stayed at the RMH and I've also stayed at the Salvation Army. Both places provided breakfast and supper and transportation to and from the hospital. 3 of my 4 babies were born very premature. Two of them were in for a couple of months. My prayers are with you and your family.


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## CottageLife (Jul 20, 2009)

Thinking of you all, and hoping the surgery went well.


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## jamala (May 4, 2007)

Praying still,


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## Common Tator (Feb 19, 2008)

NE PrarieMama, please check in and let us know how it went.


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## Mma800 (Feb 27, 2013)

Waiting to hear, although I am sure there won't be news for some time. Still praying


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## melo143 (Sep 10, 2010)

You still have me and mines thoughts and prayers


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## KrisD (May 26, 2011)

Any news? You're in my thoughts every day. Hopeful for a speedy recovery.


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## Sonshine (Jul 27, 2007)

I was hoping for some word on how things were going. I will continue to pray.


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## CottageLife (Jul 20, 2009)

Still thinking of you and your little boy. I hope surgery was successful and he is recovering quickly.


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## unregistered65598 (Oct 4, 2010)

Still praying for his recovery.


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## ne prairiemama (Jan 30, 2010)

He made it through ok!!! The surgery went WONDERFULLY!! He had some scary breathing issues afterward but is doing great now and we are back home!!! I'm sorry for not updating here sooner things were wild for a bit there!! 
THANK YOU all for your prayers and advice!
Please keep praying for his smooth recovery if you are willing


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## bowdonkey (Oct 6, 2007)

Thank God, that is the best news.


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## DW (May 10, 2002)

I check here everyday for an update...so glad things went well. Childrens Hosp are a great place.


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## CottageLife (Jul 20, 2009)

Yay! Wonderful update!


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## jamala (May 4, 2007)

So glad you are home and doing ok. Will continue to pray.


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## where I want to (Oct 28, 2008)

Hooray- may both of you be wrapped in the comfort we all are sending to you.


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## MissKitty (Mar 16, 2005)

Thank you Jesus!...Praying for a speedy...complete recovery!!!!:angel:


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## melo143 (Sep 10, 2010)

You dont need to apologize we are all understanding in this there are a million things going on. But l am so happy to hear he is doing great, hopefully you all can get rested and back together 
The Oshels


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## ne prairiemama (Jan 30, 2010)

I wanted to let you all know he is off his lasiks (sp?) meds and doing awesome so far as we can tell  He has a check up with the pediatric cardiologist Wed. afternoon. 
Thank you all so much!!


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## unregistered29228 (Jan 9, 2008)

That's great news! He sounds like a fighter!


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## melo143 (Sep 10, 2010)

Thats wonderfull 
The Oshels


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## KrisD (May 26, 2011)

Woo hoo! So happy to hear this! Update the goat forum too ok?


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## jessimeredith (Sep 12, 2004)

That's wonderful news ne!!


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## ne prairiemama (Jan 30, 2010)

Thank you!! 

KrisD I will!!


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## spud (Feb 3, 2007)

I have worked ICU's for the past twenty years and if you help in understanding medications, terminology, and trying to understand in lay terms what the MD means PM me and I can help you out with that. I think a work used in an early post is likely Lasix, a med (diuretic) to help get rid of excess fluid to lessen the workload of the heart. Our prays are with you too. jeff


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## ne prairiemama (Jan 30, 2010)

Thank you Jeff! That is what it was Lasix and that was the use!! I may very likely have a question or 2 for you in the future!! 

Little guy was back up to almost his pre-surgery weight (just one ounce to go!) when he had his check up the 13th. She said he sounded good when she listened last time. 

The peds. cardiologist said they will do another echocardiogram (heart ultrasound) on April 4th so I'd love prayers that his heart looks good when they look!

He also goes to the regular pediatrition on Friday morning for a weight check and blood oxygen level check etc. 

Thanks all!! =) 

Oh and and in his med records from the Children's hospital it said his aortic valve was tricuspid and anatomically correct. Soooooo either God fixed it or they made a huge mistake because his other echos showed a bicuspid valve!! If God changed that valve then little guy wouldn't have to have his valve replaced later. That would be awesome!!


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## nostawmama (Dec 29, 2011)

Thats great news!!


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## mzgarden (Mar 16, 2012)

best news! and well worth waiting for. So glad things keep getting better and better.


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## where I want to (Oct 28, 2008)

Those little ones are so tough. You think they are delicate because they are so small but they have so many resources for healing. 
It's good to hear that he is doing so well.


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