Moving over to this board, a story, pictures and a request (XP)

JulesDiane · September 2012

Well, I am moving on up and over to this board! This is a duplicate post on PGAL.

Sorry, but this going to be long...

Our precious daughter, Brynn Elise, was born on Tuesday morning at 11:43am via repeat c-section. She weighed 8lbs 13oz, and was 20.5 inches long. She was nursing like a champ and doing great. Up until Thursday morning, we thought everything was great with our daughter. On Wednesday morning, one of the pediatricians in our practice (who also happens to be my neighbor) did an exam on baby girl. She said she heard a very slight heart murmur, but that it was fairly common in newborn babies and they usually resolve themselves. She said the doctor on Thursday would check again and if it was still there they would have a cardiologist check it out. That pediatrician came in that morning and said everything looked great. I asked about the heart murmur, and she said she still heard it slightly and would request that the cardiologist take a look. If I hadn't have said anything, I'm not sure anything would have been done that morning. Well, the cardiologist came to look at around 11am. They had her back in the nursery for over an hour, and I sent DH to find her. They said she would be back soon, but instead the Cardiologist came by to talk to us. DD has 3 heart defects: 2 they are not immediately concerned with and a 3rd that needs to be addressed right away. If it hadn't been for the hole in the heart that was causing the heart murmur, we wouldn't have found the 3rd issue until it started causing major problems. If we had not caught the issue then, when we had brought her home she would have started having weird issues and started turning blue and we would have not known what was going on! She has something called coarctation of the aorta. Essentially it causes reduced blood flow from the heart to lower part of the body. She was moved into NICU on Thursday and has been there ever since. This morning she is being moved via ambulance to the children's hospital where she will have the surgery. We don't know when the surgery will be, but probably Tuesday at the earliest. Since she is stable, she is not as high of a priority. She has been doing great in the NICU and we have been able to visit her often. I was a complete mess on Thursday, but have been doing better day after day seeing how well she is doing on the medicine in NICU and talking with the doctors. Also my neighbor pediatrician has been keeping on top of things and talking with us and I have a good friend who is a pediatric cardiac anesthesiologist at the hospital Brynn is being transferred to who has also been able to talk to us and find out information for us. She knows everyone that will be working on Brynn's surgery which is such a comfort. It was so hard to check out of the hospital and leave her behind. Sad . I have been staying busy pumping every 3 hours to keep my supply up, and to have milk once they allow her to be able to eat again after surgery. Once she has the surgery, it sounds like it should be a fairly quick recovery. I am so scared for her to have heart surgery, but I am ready for her to be healthy and for us to have her home. Any T&Ps you can spare would be appreciated.

And some pictures for making it through that long story:

pottermommy · September 2012

She is absolutely precious. I am sure this is a very scary time for you, I will keep you all in my prayers, keep us updated on her progress.

Hoping she is home in your arms as soon as possible. Lots of hugs and thoughts.

kaleb87 · September 2012

First off, congratulations on your beautiful girl, and welcome to the board! I am so sorry your family is having to go through this. Your family will be in my thoughts and prayers! Your daughter is lucky to have you as a mom because it sounds like you are on top of everything. Wishing your beautiful daughter a speedy recovery! Please keep us updated.

charmedgrl517 · September 2012

Congratulations, she is beautiful. I'm so sorry you are going thru this. You are very strong!! I hope her surgery and recovery go very well and she is home with you very soon. Many TP to you and your family.

JulyMomma2U2 · September 2012

First -- Brynn is so beautiful!! She is so alert And, such a cutie!!

Second -- thank goodness you mentioned that to the pediatrician! My DS had a heart murmur -- but, very faint.. they picked it up when he was in the NICU, and then my ped followed up on it -- as of his 1 month check up, they still heard it, but only slightly.. no one has mentioned having me have him checked out further.. thanks for you posting this, I will definitely make sure I bring it up at his 2 month appointment tomorrow!!

As far as Brynn goes -- I'm sure she is in excellent hands.. it's wonderful that you have so many knowledgeable "medical" friends that can stay on top of Brynn's progress.. I'm sure this is a terrifying time for you -- so scary when our LO's don't get to come home with us

Stay strong, Momma, and keep us updated no her progress and when her surgery is scheduled!! Will be keeping you and your LO in my thoughts and hoping she makes it home to you quickly!!!

((((big hugs))))