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Post by dara1012 on Oct 29, 2012 19:11:55 GMT -6
DH's best friend from high school who was a bridesmaid in our wedding just had a baby boy on Friday who was born with a congenital heart defect.
Fortunately they knew about the heart defect before birth so they were able to induce and deliver at Abbott Northwestern and he was rushed to the NICU at Children's Mpls where he received the oxygen and immediate procedure he needed after birth. He is doing pretty well, but needs heart surgery in the next day or so to correct the problem so that his heart can circulate the blood and oxygen properly throughout his body. He is a good size for the surgery (about 7 lbs) but any surgery on a newborn is scary and especially one on the heart.
Please say a prayer for our friend, her husband, their new baby and the new big brother who is 8 and so much wants his baby brother to come home soon.
Update 2/27/13:
I have been meaning to update you all on this sweet baby. He is now 4 months old and after successful heart surgery in December and weaning off ventilator and feeding tube in January, he has officially been home for 6 weeks. He still has some health complications that they are keeping an eye on and will do an MRI when he is a bit older to see if the fluid that was on his brain early on caused any damage and he needs a follow up surgery this summer. But overall he is doing really, really well. His mom posted on caring bridge last night that the doctors discontinued his pain med that she had to get up and give him in the middle of the night, so she can *hopefully* sleep through the night. Thank you for all your prayers.
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Post by sharon on Oct 29, 2012 19:34:48 GMT -6
Absolutely!
Not sure what the exact issue is, but my 9 year old niece has a congenital heart defect and had surgery as a newborn and then again as a toddler. She is healthy and strong and has a great spirit!
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Post by lilmermaid on Oct 29, 2012 21:36:52 GMT -6
Praying!
I too have a friend whose son was born with a heart defect and has had multiple surgeries, all at Children's. He is doing very well too. I can't remember if he is 4 or 5.
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Post by momof3anddog on Oct 31, 2012 21:47:57 GMT -6
I wish I could say, tell them that "it will be alright" and "your child will be okay"; Hopefully that is true. It is true for a lot of people who have children with special needs or a born way too early like mine, and therefore have special needs. But it isn't true for everyone. Some kids survive against all odds. Some don't. I'm not sure why that is. I have had way more than my share of miracles when it comes to my two pound , 29 weeker twins. But have also seen those who don't get their miracle, and their child doesn't make it, in the 9 weeks my children were in the MPLS Children's Hospital, and also the two times after when one of my twins has been hospitalized for a week and it was truly "touch and go" for that week. Again, during those two separate occasions, I saw children around my child's room not make it. I wondered if mine wasn't going to make it. I could easily see how a child could not make it, seeing my son's pale body, so quiet and with blue lips from fighting a viral cold and not being able to breathe. However, my boys are now 3-years-old and doing well. You have met them both and I hope that they get to experience their child going stronger via getting the surgery that he needs, and thriving like mine. I really do. Just be there for them. There are going to be times (during this NICU stage) when they are just so tired, and don't know if they can go another day or if they want their child to continue to suffer. They are going to be days when they get mad at those around them who tell them endless positive stories about this child and that child that made it out of something very similar. It is really hard when going through this to believe that you are going to get that same miracle. 'Cause if you were going to, then why do you have to be going through this right now? Then are days when they can't get enough of hearing all the miracle stories of similar situations to their son's. There are going to be days when they feel guilty about not being able to do everything they want to do for their older, healthy child as they are worn out physically and emotionally from tending to their ill son. It is an up and down struggle being a parent of a newborn with medical issues. There is modern medical science that blows your mind that can do marvelous things for a lot of children. But not for all. I hope your friend and their son is one of those who gets this miracle. I will definitely pray. But just let them know that there are people out there who "get it" on many levels what they are going through right now -- the ups and downs, no matter how it ends up. I am one of the of them unfortunately, as are many moms on this website. And if you have to go through this, Children's Hospital is one of the very best places your child can be. That's about all I can say. But I will pray.
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Post by jess7882 on Oct 31, 2012 22:23:52 GMT -6
Saying a prayer for this family!!!
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Post by dara1012 on Nov 1, 2012 10:27:42 GMT -6
Thank you for the prayers.
They have had to postpone the heart surgery because his kidneys aren't functioning quite as well as they would like. The positive is that the temporary procedure they did is sufficient for now and they will remove the breathing tube today. They will give him the weekend to get his kidneys functioning to where they want and perform surgery early next week. My friend and her husband finally got to hold their baby and have him baptized. They are hoping to hold him again this afternoon.
Thank you for continued prayers for baby Kilian
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Post by dara1012 on Feb 27, 2013 13:48:56 GMT -6
Happy update 2/27/13 in original post.
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Post by jess7882 on Feb 27, 2013 16:39:49 GMT -6
I'm glad he is doing better! Prayers for continued health.
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