Tetralogy of Fallot - Hysterical - Updates on page 3 and 5

[TMonster]

I am off to meet with the genetic counselors today. Hopefully I can get the amnio done today too. I really don't have the emotional energy to wait days for it. My eyes and face are bright red from crying and lack of sleep. I just hope everything is okay. I love my baby so much and just wanted everything to be okay. I feel so stupid for finally feeling relaxed going into this scan because I just had the same exact scan done 2 weeks prior and nothing was found. I've been a mess before every single scan except for this one and it ends up being one of the worst days of my life.

 

[zanDark]

I am off to meet with the genetic counselors today. Hopefully I can get the amnio done today too. I really don't have the emotional energy to wait days for it. My eyes and face are bright red from crying and lack of sleep. I just hope everything is okay. I love my baby so much and just wanted everything to be okay. I feel so stupid for finally feeling relaxed going into this scan because I just had the same exact scan done 2 weeks prior and nothing was found. I've been a mess before every single scan except for this one and it ends up being one of the worst days of my life.

My thoughts and prayers are with you honey I'm hoping that you'll get the best possible news about your LO and will be able to do the amnio today.

 

[LadyMuck80]

All the best for today.

 

[Foxy37]

i hope you got the amnio today and that you soon have some answers . You are on all of our minds and we are all praying for you xxx

 

[bekkie]

thinking of you hope you get the results back quickly.

 

[Hopeful1479]

Just wanted to send love and thoughts your way, I can't imagine the shock and uncertainty that is a head for you and your family. But like others have said tackle each obstacle one by one and you will figure this out and make the right decisions for you thorughout this process....

 

[TMonster]

I am finally back home. I actually really enjoyed my meeting with the genetic counselor. She was really great and totally sympathetic. She went over all the risks and complications for everything. She pushed really hard to get me the amnio today and at first she thought she wasnt going to be able to but then she finally pushed and got me in.

The doctor who performed the amnio was sweet and charming and really skilled. I have to say, it was a pretty horrible experience overall but I really appreciated his effort. First they did a bunch of scans to make sure they could get a good angle and position, he walked me through everything as he was doing it and didn't stick the needle in till I said I was ready. The needle stick hurt... quite a bit... but it was this unbearable nausea that I felt with it that made it rough. I started feeling queasy, broke out in a cold sweat and felt like I was going to faint. I was so afraid of moving that I just kept saying I am gonna vomit, I am gonna faint. As soon as he pulled that needle out I vomited and then started dry heaving which I am sure wasnt great for my uterus. He gave me snacks and juice after and wouldnt let me sit up for a while and made sure I took it really easy. Once I got up and was feeling fine he asked me to spend an extra 10 min in the waiting room just to make sure the lightheadedness didn't return. As soon as I got to the waiting room one of the other nurses saw me and told me that coincidentally they had a vacant room available because someone was on vacation and she set up the room for me, turned on the AC, gave me their phone, more snacks and juice and told me to lie down and relax for as long as I wanted. She was really super nice.

I spent a while in there and ate some cheddar bunnies. Once I felt up to heading out I did. I had to go across the street to get my blood drawn but everyone there was super nice too. They managed to get it done quickly and I was out of there before I knew it.

The cab ride home was, other than the actual procedure, the worst part. The ride was so bumpy and took so long it made me cramp up and I swore I was going to die before I made it home.

I am on bed rest now. They should have the preliminary results by Friday. I am on bed rest now and just relaxing and waiting and hoping not to have any complications from the amnio and that the results turn out well.

 

[TMonster]

Oh also wanted to add that I spoke with the doctor who performed the second ultrasound yesterday and she said that there were no other abnormalities and no deformities that are generally seen with DiGeorge like clubbed fingers, cleft lip or palette, wide eyes, low ears, small jaw etc.

I know it doesnt mean much but it still made me feel a bit more hopeful.

 

[bekkie]

so sorry you had to go through that but it's nice to hear that the staff were good and helpful. glad to read they didn't find any other abnormalities though! That is great!

 

[Mummymelie]

Good luck and rest up! I had an amnio with my last pregnancy so I know how it feels but you will feel fine in the morning but still rest up!

 

[zanDark]

I'm so sorry you had to go through that! It's wonderful to hear that you were properly taken care of by caring people Also the news about no abnormalities being seen is great!! Hopefully more good news is to come!

Rest and take good care of yourself and LO I'm keeping you both in my prayers and hoping for good news

 

[JessyG]

so sorry it was such a rubbish experience and will be praying for a good result on friday for you. Get plenty of rest and look after yourself.

 

[Nicolalove353]

I really hope everything turns out best case possible! It must have been so Scardy to go through but I am so happy that you were able to get your amino done today. It is great news that they didn't find any other deformities that could point to digeorge. I hope you get some rest and that the time passes as fast as possible for you to get the results.

 

[Komatsu]

I'm sorry you've had to go through all this . Good luck , hope you get good results on Friday .

 

[Proserpina]

I know it doesnt mean much but it still made me feel a bit more hopeful.

Good. You sound like you could really use a little hope.

They were able to get my amnio results back to me the next day, in spite of telling me it would take two days. Here's hoping yours come soon, too.

And like I said earlier: DiGeorge is seldom a death sentence. Most children with DiGeorge grow into functioning, independent adults who hold jobs and many of them obtain college degrees. Many DiGeorge patients have gone through childhood not knowing they had it until they became adults and gave birth to or sired children with more severe DiGeorge symptoms. It's almost always more benign than Down syndrome or severe autism. I grew up with a brother who is severely autistic and I'll take DD's DiGeorge syndrome over that any day of the week.

 

[Jaymelynn]

I am sorry you are going through this. I hope you are resting up and will feel better soon. I want to second what Proserpina said. I worked with a girl that has DiGeorge, although she is more severely affected (also has autism) her mother also has it, but was not diagnosed until her daughter was born. Like most syndromes there is a large range. I also work with two children with TOF. One is 6 years old, had surgery at birth has not had any additional heart issues since. Another is 8 years old, with two other heart conditions in addition to TOF, had surgery at birth and has NO physical limitations. I believe he could outrun me Online you can find a zillion horror stories, but there are also positive ones. Medicine has made so many advances, especially with pediatric heart surgeries. I see you live in NYC, you have access to excellent doctors and hospitals.

 

[laila 44]

Sending you lots of hugs and positive thoughts xxx

 

[beagleowner]

When do you get the amnio results?

 

[angel2010]

Oh TMonster, I am sorry you are going through this. I will be saying extra prayers for you and your little one.

 

[lotuspetals]

Thinking of you and wishing you the best. Everything will be okay. Just get plenty of rest, take it one day at a time like others have said, and most importantly, be kind to yourself. That's great news that they didn't find any other abnormalities.