Vibes and prayer request for my niece and her newborn baby girl

About two weeks ago, my niece gave birth to two baby girls (fraternal twins).  One twin is healthy; however, the other girl has a congenital heart defect called tetralogy of fallot.  She has had a number of tests, and unfortunately it's not the commonly known kind that can be fixed with surgery at an early age and then just monitored.  In fact, it seems the doctors are not familiar with her particular condition at all.  They have assembled a team of doctors to discuss scenarios and are going to do surgery on her soon.  They also don't know exactly how many problems there are until they can get in and see for themselves what is going on.  Hopefully, they can fix what is wrong and she will be okay, but she would eventually have to have additional surgery because the stent or whatever they use to repair would not grow with her and would have to be replaced.F ortunately, they have one of the best surgeons on the east coast for this type of surgery.    My niece and her husband are coping as best they can, and the grandparents and friends are helping.  We live in another state and the only thing we can do for them right now is pray.

http://www.mayoclinic.com/health/tetralogy-of-fallot/DS00615

Oh my goodness.  My prayers are certainly with them all.  

Please keep up updated if you can.

Thank you! It's a scary situation.  Not sure when they will be doing the surgery, but I'll post an update when I know anything more.

Sending and

many many vibes for the family 

Prayers for mother, baby and family.

Surgery is scheduled for Thursday or Friday of this week.  They have a "team of doctors" who will perform the surgery.  We thank everyone for their prayers and wishes, I know they will help!

Continuing the vibes!

Thank you to everyone, and the family asked me to pass along their thanks and gratitude as well.  The surgery was today, and it went well!  They were able to fix 2 of the 3 problems - they created a left pulmonary artery and enlarged the artery at her heart.  The only thing they couldn't do was close the hole between her ventricles - but they hadn't been planning on doing that until she was a little older anyway.  She will need more surgeries, but just have to wait and see.  We will probably get a little more information later this evening, I've just had texts so far, but we'll get someone on the phone tonight.

Glad to hear it went well!

Update: They took her off the ventilator yesterday.  She is doing well and may be able to eat on her own soon.

Unrelated to the surgery - they are testing both twins to see if they have CF or carry the CF gene.  I feel so bad for my niece and her husband, having to go through all this. 

I missed this thread. Many that both twins don't have cystic fibrosis and that the heart surgery was a complete success.

Many prayers for the baby to grow up normal, it sounds like things are going well. May God bless her with good health, and bless the family.

Many that the CF test is negative.

Prayers to your family

Sending many vibes for the baby and your entire family.

I'm reviving this old thread because my grand niece is once again facing open hear surgery.  She has not been gaining weight. In an attempt to rule out heart problems, they inserted a catheter into her heart and injected dye.  Part way through the test, her blood pressed dropped alarmingly.  They stopped the test and got her bp back up and have her stabilized.  Since then, they've done XRays (or other tests) and discovered a pseudo aneurysm covering the incision.  The doctors believe that it is collecting blood and interfering with her blood flow.  She is currently in the hospital - in an incubator - heavily sedated.  The surgery will be either next Monday or next Wednesday, where they hope to repair that problem and also fix the hole in her heart that they had planned to go in and fix when she was around 2 years old.  I'd like to respectfully ask if you could please keep this baby and her parents in your thoughts and prayers, they've been through so much already and now this.

I am praying for her, the doctors, nurses, etc and for her parents and the entire family.  Please update us after her surgery!

A friend of mine in nursing school has a son with TOF. He's doing well, and I'll be sending warm vibes that your niece will too.

Mega that everything goes well!