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My blue baby


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  #1  
November 20th, 2007, 01:36 PM
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Join Date: Aug 2006
Location: Sydney
Posts: 135
Just wanted to share some sad news about Daniel. He has been diagnosed with congenital heart disease. He is a "blue baby", ie there are various things that are wrong with his little heart so he never gets enough red (oxygenated) blood in his body. We think he will get better, but the poor thing will need 2 or 3 heart operations to get there. The first operation is likely to be before xmas (or soon after that).

I think we are still in shock over the diagnosis, particularly because nobody had noticed anything wrong with him until a few weeks ago. But ever since, our lives have become a whirlwind of hospital stays, medical appointments and endless uncertainty. He has been admitted to hospital three times this month, including a 24 hour stay in an intensive care unit which nearly killed me. The thing is, he is sick and will need a lot of medical care, but I think he has been getting more medical care than is actually necessary. The stay in intensive care, for example, was due to a mistake - some idiot who obviously knew little about heart conditions in babies decided that Daniel's breathing difficulties were due to a collapsed lung, when in fact his lungs were ok and the heart was the problem.

Having said that, Daniel will have to spend time in intensive care (after his operations). There is no denying that his little heart, in its current condition, is not up to the job of keeping him alive in the long term. Currently, he is stable (although a bit blue) but if nothing was done he would be unlikely to survive into adulthood.

To be told that my little baby needs open heart surgery (not just once, but several times!) has been devastating. I am also terribly angry - I keep thinking that "this is not fair" (as if there ever was any fariness to the fact that your baby gets sick). At times, I have been so scared that I could hardly breathe myself. Other times I feel optimistic and then I don't know whether that is OK or I am just in denial. Mostly, I feel I am just trying to survive and to be strong for Daniel.

So, that is where we are up to. Within the next few days, we are supposed to spend some more days in hospital for more tests and after that we will have to wait for Daniel's first surgery. Hopefully, things should run smootly until then (ie, we hope Daniel will be in reasonably good health during this time). I will update you when we have more news.

Take care

Paula





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  #2  
November 20th, 2007, 06:35 PM
beck12's Avatar Platinum Supermommy
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Location: Michigan
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OMG Paula I am just in shock! When I read your title I had NO idea it would be something this HUGE. I am sooooo sorry your are dealing with such a serious health issue with Daniel. I know these kinds of surgeries are done all the time with great outcomes, but I know if it were me I'd be flipped out too. Please do keep us updated. Feel free to come & vent, cry, whatever. It really IS not fair - not at all!!! If there is anything I can do - if you ever want to talk (via phone, etc) I am here hun. I will absolutely be keeping you & Daniel in my prayers & constantly in my thoughts.

Much love!
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We've begun to raise daughters more like sons... but few have the courage to raise our sons more like our daughters. ~Gloria Steinem

If a man has been his mother's undisputed darling he retains throughout life the triumphant feeling, the confidence in success, which not seldom brings actual success along with it. ~Sigmund Freud
My mom is a neverending song in my heart of comfort, happiness, and being. I may sometimes forget the words but I always remember the tune. ~Graycie Harmon
Don't wait to make your son a great man - make him a great boy. ~Author Unknown
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr.
A man loves his sweetheart the most, his wife the best, but his mother the longest. ~Irish Proverb
Mother's love is peace. It need not be acquired, it need not be deserved. ~Erich Fromm
Children need love, especially when they do not deserve it. - Harold Hulbert
Mother is the name for God in the lips and hearts of little children. ~William Makepeace Thackeray
God could not be everywhere, so he created mothers. ~Jewish Proverb
The best conversations with mothers always take place in silence, when only the heart speaks. ~Carrie Latet




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  #3  
November 20th, 2007, 07:40 PM
lizard's Avatar Platinum Supermommy
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I am so sorry. I'm glad that they were able to catch the problem before it got any further, not that it makes it any easier. Your son and your family will be in my thoughts and prayers.
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  #4  
November 21st, 2007, 07:09 AM
4iris's Avatar Platinum Supermommy
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I can't even imagine how hard all of this must be on you and your family. You all are in my prayers for as long as you need them. We have a little guy at church who is 10 months and has been through similar surgeries. He's happy and healthy and doing great now. Hang in there and please let us help support you. You know we have open arms and good listening ears.
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  #5  
November 21st, 2007, 05:47 PM
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I'm so sorry to hear the news, Paula. Please keep us updated and we'll be thinking about you.

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  #6  
November 21st, 2007, 06:32 PM
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I'm PMing you now...
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  #7  
November 22nd, 2007, 02:05 PM
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Location: Sydney
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Thanks a lot. The hugs, prayers and support mean a lot to me.

Daniel is doing ok at the moment, which is a great relief. He is also looking a happier and more relaxed now that he has been at home for a few days. (He had a very hard time while in hospital - it broke my heart every time he looked at me with his frightened little eyes.) He is also eating well which is very important right now (he needs to build up some fat reserves before the surgery because babies loose a lot of weight after a big operation such as the one Daniel is going to have).

So, at the moment, we are just waiting to hear from Daniel's doctors (the cardiologist and surgeon) who will decide whether more tests are needed before the first surgery. All these tests are very invasive so the fewer of them, the better. But get this, he had an MRI on Monday which was supposed to provide all the info they needed for surgery. The MRI is meant to be a more "gentle" test, but it still meant that Daniel needed to be put in a respirator while the test was taking place. He needed to be sedated so I was told not to feed him for 6 hours prior to the test. That would have been OK had it not been for the fact that somebody made a mistake with the timing of the test so Daniel ended up having to endure nearly 14 hours without any food at all (and he is only a 11 week old baby!). And after all of that, the cardiologist said to me that it was "unfortunate" that the radiologist that did the test was not very experienced so they didn't get the sort of quality pictures they needed!!! I was furious, but their attitude seems to be that "these things just happen" so I was basically told to be more "patient and understanding" (as if!).

So, yes, there is a lot to deal with at the moment but I keep thinking that I have to stay positive and strong so we can deal with whatever comes our way.

Take care

Paula
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  #8  
November 22nd, 2007, 03:22 PM
beck12's Avatar Platinum Supermommy
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Oh Paula! How ridiculous that your poor lil guy went so long without eating & their attitude is "Oh well". I would think any momma would be furious! I am glad he is home & doing better & I certainly hope that if he has to do the test again they are more together & don't make it any harder on either of you than it has to be. Thank you for another update.
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B - Crazy momma to my two boys
We've begun to raise daughters more like sons... but few have the courage to raise our sons more like our daughters. ~Gloria Steinem

If a man has been his mother's undisputed darling he retains throughout life the triumphant feeling, the confidence in success, which not seldom brings actual success along with it. ~Sigmund Freud
My mom is a neverending song in my heart of comfort, happiness, and being. I may sometimes forget the words but I always remember the tune. ~Graycie Harmon
Don't wait to make your son a great man - make him a great boy. ~Author Unknown
You don't raise heroes, you raise sons. And if you treat them like sons, they'll turn out to be heroes, even if it's just in your own eyes. ~Walter M. Schirra, Sr.
A man loves his sweetheart the most, his wife the best, but his mother the longest. ~Irish Proverb
Mother's love is peace. It need not be acquired, it need not be deserved. ~Erich Fromm
Children need love, especially when they do not deserve it. - Harold Hulbert
Mother is the name for God in the lips and hearts of little children. ~William Makepeace Thackeray
God could not be everywhere, so he created mothers. ~Jewish Proverb
The best conversations with mothers always take place in silence, when only the heart speaks. ~Carrie Latet




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  #9  
November 26th, 2007, 08:33 AM
4iris's Avatar Platinum Supermommy
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How incredibly frustrating! You have every right to be upset. I'd have been livid! I'm glad that Daniel is responding well to being at home. We're always here for you, so unload all your emotional burden on us and let us help you carry it.
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  #10  
November 26th, 2007, 03:42 PM
Gaby&Emmy'sMama's Avatar aka NZ-Emma
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I am sorry that you and your family are having to deal with this - I'm keeping you all in my thoughts

Emma xx
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  #11  
December 17th, 2007, 11:40 AM
Rina42308's Avatar Mega Super Mommy
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Paula-I just saw this post. I am so sorry for Daniel's condition. I can not imagine what you must be feeling right now. You are sooo right, this is not fair. Not at all. Not to you! How are you and Daniel doing now? Has he had surgery yet? You are both in my prayers. Many, many hugs, Norina
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  #12  
December 17th, 2007, 08:53 PM
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Thanks for the update. I can't believe he had to go so long without eating! I'm so sorry for both of you.
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  #13  
December 18th, 2007, 10:30 AM
candacesoon's Avatar Mega Super Mommy
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Paula,
You're right, it's not fair and my heart aches for you and your sweet little Daniel. I can't believe how that hospital is making this horrible situation even worse. How can they be so callous? I'm glad that Daniel is feeling more comfy at home and I will say prayers for him and your family.


Love,
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  #14  
December 20th, 2007, 09:09 PM
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I just saw this post! I'm so sorry hun that you're having to go through all of this. What a trooper lil' Daniel is. I can't believe they had an 11wk baby go 14hrs without food!?! That's just cruel and wrong on soooo many levels. Hang in there hun. We're here for you.
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  #15  
December 27th, 2007, 05:39 PM
heathernoel's Avatar Platinum Supermommy
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Location: Maitland, Florida
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Popping in to say that my oldest, now 8, is a 'blue baby', aka Tetralogy of Fallot. Her surgery came at 12 weeks, and since then, she requires monitoring on a bi annual basis. Her next surgery will be as a teen, probably, to replace the valves they had to build.

I am so sorry anyone has to go through this, but if you need support from a btdt, I am here for you.\

God bless you.
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