I rec'd this e-mail (so some may have already read this!) & decided to share it with you all to hear a better perspective of what's going on.
We've been bombarded with calls of concerns and support. We appreciate all the prayers and thoughts during this difficult time. I thought I would give you all an update of what's been happening - Andie has been here at St. Josephs CPTICU since Sunday.
This all started Saturday the day after we brought her home. Friday night she ate and slept like any other newborn. Saturday she started to become lethargic so we took her to the ER. I dropped her off at the front door then parked the car. As I came back to the ER and they escorted me back to their room a "Code Blue Room 11" came over the intercom. I knew that was Andie's room so I asked the guy who walked me back. He said it means heart stopped. I told him that's my little girls room and show me the way quickly.
As I got there there was 15 doctors, nurses, techs, etc working on her. I saw Brooke over on the side crying so I went to her and tried to grasp all what was going on.
After what seemed to be eternity they got her under control. Come find out she did not "code" but rather had a 56% oxygen saturation.
So after an lengthy time we got her moved upstairs. So at first they thought she had a virus - Group B Strep, Meningitis, Pneumonia, and RSV. All which is deadly. So after the 2 day mark what they noticed is her PDA (Patent Ductus Arteriosus) started to close her Aorta started to close as well. They call this Coarctation of the Arota.
So they wanted to get her stable so they could perform the open heart surgery. After this she was medivaced to St. Joseph's hospital. Where they have one of the best pediatric cardiac unit in the US.
Her vitals started to take a turn for the worse. Her blood/oxygen saturation would not increase. It would only stay in the 70 - 80% range. And you could see her lower extremities were not as pink as the rest of the body. So now she has PPHN (Persistent Pulmonary Hypertension of the Newborn). This mean her lung vessels are tight and cannot let blood transfer through them. So at this point they told us that they want to perform surgery right away (like within the hour) so they can put an ECMO on her (Extracorporeal membrane oxygenation) - a machine that bypasses the lungs to oxyngenate her blood. And also they would repair her Coarc of the arota.
We did not think she would make it out of this surgery. So we said our goodbyes to Andie.
What came to our surprise was our nurse came to the waiting room with a big smile on her face and said they're done with surgery and they did not put the ECMO on her but did correct her heart. They saw her stable and getting better right before the surgery.
So we thought this was great news. Even though they had to go through her chest to fix her heart - we didn't care. She's alive and getting better. Once the Arota is fixed - it's done. No chance for relapse basically.
You couldn't believe how we felt to think she was out of the woods and she's a little fighter. So now we are 2 days pass the surgery and she is taken a turn for the worse.
It appears her blood/oxygen saturation is in the low 70% range. Even though she was in the 90 - 95% after her surgery. We are all baffled on why she is. At this point they are giving her every medication possible to correct the vessels but it seems nothing is working.
The possibility of her going back to the OR to get the ECMO placed is pretty high now. The next few hours will tell a lot for us. But we are hoping that the meds will kick in and do their job and Andie will settle done and get better.
Last night she had to have a blood transfusion and several different medications. Nothing seems to work at this time. And the most important thing is we have to keep her calm and relaxed. She is sedated and the room is very calm. We are not allowed to talk to her or touch her. No stimulation is allowed at this time.
So you can imagine how well Brooke is taking this. We were lucky to touch and talk to her this morning. The nurse allowed us to do so during her assesment. It was such a treat to do this little feat. Just to be able to touch your child, a child that's less than a week old and going through what she's going through is a blessing by itself.
The light at the end of the tunnel is this is reversible and correctable. We are praying with all our heart that we can get her blood/oxygen saturation level back to her normal range and start working properly.
Please look at a web site Brooke's sister set up. It's a blog that Kelly updates on a regular basis. Go to andiegrace.blogspot.com to look at her updates. Sorry if this update is all over the board, but I'm doing the best that I can given the current circumstances. Thanks for all your supports and thoughts.