It has been a journey for sure.
7:00 am my first text for support, well wishes and prayers from Nancy.
my return text: Thanks for the prayers...I know in the morning when I am alone it is going to hit me. Now, I am so busy it is being distracted.
8:36 am all the kids are in the van ready to go to camp..I am picking Emma up out of her bed and LOOSE IT!!! Crying so hard I can not breathe! A quick prayer to please let me place her back into this bed in the next ten days...
9:00 am phone interview while driving to get Emma on SSI...lasted to 10:15am.
11:00 am checking four kids into camp in Bradenton until about noon or a little after
Monday 1:00 pm checking into the hospital; an experience only those adopting parents can relate. I am arriving with a baby not yet completely adopted. I have an insurance card made from the hospital ID which is one name, a court order with a name "BABY GIRL" and then I am of course calling her Emma Rose. ALERT ALERT...so after much discussion the admissions are going with the court order name.
On to pre-op..We check in as I am scared to death and praying I have the strength to keep up. Text Nancy at 2:09 pm "not doing well" I on one hand do not want it to happen because this would be #3 death...the women in the car accident, my friend Melanie and now who is #3...is it true death runs in 3's ?? We start the process...OOOOPPPPPSSSSS the nurse reads the court order and calls a halt to proceeding..The court order reads that I have full medial coverage over her for her best interest...the nurse reads it to mean I can get her medical insurance only. insurance as in the policy for paying for health care but not for me to take her to have PROCEEDURES done so she wants to see a court order which has the words procedure and at one point wants a court order showing I can sign for this life threatening surgery if she doesn't have can die............. so if we do not go through with it is Emma #3 ????? I am a wreck....... I call our attorney. He assures me this order is fine. The nurse asks if I can get the birth mom to the hospital...The birth moms rights have been terminated for weeks.... HELP!!!!!!!
They are talking about rescheduling. I told them do not plan on it to be here because it is not in our best interest. I have no support here and the kids camp is over so I need to go to Miami because the kids can stay with friends and I would have people at the hospital for support ... I call my attorney who is diligently trying to get word to the judges assistant. We can get before the judge Wed morning...but surgery is Tuesday less than 24 hours.... We ask for the hospital attorney to make the call on the order not a nurse...They then ask me to go on the tour of surgery and they will work on the court order... Did I mention I am a mess...scared beyond I can type...All I could think about is how fast I could get out of here... what would happen, I need a friend..I need a sign.... during the tour risk management clears the court order for us to move forward on surgery.
I have so many questions but nothing seems to surface.. Ok, I come in, we get hooked up to machines..NOPE.. Today they will draw blood, get an EK and some x-rays. Tomorrow I love on her until I hand her off to the surgical team. During the tour I go to the waiting room and learn that everything will be on a monitor as far as where she is each moment. In pre-op, holding OR, post op etc. She is assigned a number for me to follow. Once back on the floor I see the OR area and where the red line is I can not pass... on to post op PCICU Pediatric cardiac intensive care unit. I meet the nurses and one is very informative for me.....YIKES TMI too much information...not really. You se I have called plastic surgeons about the scar and I have the name of the tiny stitch to be sure the surgeon is going to use so the scar is min for her life long memory of this day....I learn that the nurse practionor will be stitching Emma up!!! It went like this.. I ask how long will it be before I can hold Emma. I know the surgery is about four hours is all goes well. The nurse states that when the surgeon is coming out to talk to me when he completes the surgery Emma is still on the table getting finished up and stitched closed before they move her up here and when she arrives here they need some time to untangle wires, set her up on the machines in the room correctly check her stats and have everything in order as she is priority WHICH I AGREE SHE IS PRIORITY...But back up....the surgeon is talking to me WHEN SHE IS FINISHING UP???? Who is FINISHING UP ???? So we move on...I have this stitch to educate them on.... I am so afraid of a horrible scar.. My mind is all over the place..I also learn that I will not be able to stay in her room 2 to 3 days as the life support machine makes it too much to have parents sleep over...I had rsvp's RMH only one night. We head to Pre-op to get the blood work, EKG and all completed and off to x-ray..we are behind schedule...I am actually complete with pre op heading out the front door of the hospital with a near naked baby and my mind --head on backwards one might say.. I need to find the Ronald McDonald house to gather myself and get a couple hours of sleep to be back at the hospital at 6 am. It is now after 5pm Monday I can feed her until midnight and at 4 am wake her for meds and pedialyte which I now need to stop and buy. I am scared shitless right now and can only envision heading south on I 75 and wish this to all be a bad dream.... My van makes the trip to RMH regardless of what my mind is imagining.
Once at the RMH nearing 6 pm we learn the ropes..I am 1/2 there just want to cry and hold my baby. 6:11pm I text our attorney to let him know risk management has cleared her and we will be having surgery in the morning. He is of the Jewish faith so I ask him to wish us well and she does to OR 7:30 am. 6:19 pm I text Nancy letting her know I am scared shitless It was awful when I was in pre-op and when signing consents the PDA was not listed to be repaired, I had to ask, they had to call, we had to redo consents...HELLPPPPPP. I must get with my faith..I must find inner strength. I decide to feed Emma and the two of us take a bubble bath. I play with her but she is not enjoying this she wants something different. We spend quiet time on the bed although my mind is heading to negative... we head downstairs to find the nice ladies to "chat" but they have left. Not many people in the house so I put on the television for the mindless show Baccalaureate. This keeps my mind clear of surgery for an hour and Emma is asleep on my chest. we are chilling......after the show I search for a book but nothing struck my fancy so back to the room.....then back down for the news...no TV’s in the rooms... some people are coming in from their time with their child at the hospital... I GET TO TALK... I share our story...they share their story...we both state we are not from Tampa area... they say they are from ft Myers. I say I am from Cape Coral...they state yes they re as well but always say FM because most people don't know CC...Then we share where in the Cape we live...they live within a mile of my home!!!!! Amazing. Relief for a few minutes..the news went by and I missed the information but I am now ready to head to sleep..I am not sure how to return the key or if I should..What is she doesn't come off life supports tomorrow..They say she won't...
FOUR AM it was here before I knew it.. I gave Emma her meds with much resistance as she was not ready to wake up. Then to flush with pedialyte..not going down and vomit all over... oh shit...is she sick? Do I call, who do I call?? I decide to pack EVERYTHING up because we might be just going home... please.....help me...guide me... I get a little lost on one way roads heading back to the hospital..Is this a sign...am I over reacting looking for a sign??? I need drugs...maybe they will put me out along with her...please...I have not slept I am stressed beyond and all I have is my lifeline to the world through face book.... my friends. I find myself going 20 in a 40 mph zone..I look up and see the St Joseph's hospital in front of me and I find my foot lifting off the accelerator...how can I do this??? I need to draw strength from somewhere.... I find texts rolling into my phone. Nancy is texting by the second.. I press the accelerator and park the van. I am taking Emma, my purse and my camera.. Emma is in my sling. I am trembling in fear and at the same time with anxiety to finally be on the other side of this heart surgery. I walk slow and steady holding my phone as it vibrates as each text comes in...Nancy is with me...I walk right past Pre- op and feel disoriented...I take a couple deep breaths and there is the door and another family waiting to walk in... We smile at each other with the same facial expressions....As I enter the room everyone is cheerful, upbeat, positive.. I feel like I can fall to my knees...They have a big chair ready and waiting for me..no stretcher...I sit, I do not take her out of the sling. I am holding her tight as she sleeps. They take her vitals in my sling...another nurse brings me a gown..I am not moving. I figure if the stretcher isn't here I am not moving her at all. They offer me coffee..as me if they can help. I hear this little boy crying as they make him take his dads yellow rubber bracelet off which his dad gave him for strength during surgery...yellow bracelets in the hospital mean DNR...YIKE!!! the mom is telling him that the yellow would mean not to wake him up so he needs to let her hold it..she replaced it with something out of her pocketbook that was dads. Her she is...the nurse that says we are ready....my hear falls, tears gather and she says come with me, carry Emma in your sling. as we get into the elevator four others join us and inform me they are my team. That they will be assisting in the OR with the surgeons. They are loving Emma's red hair and comments as we enter the OR area is oh, here is our little red head..Everyone knew her..I am trembling. Everyone is smiling upbeat and positive. A woman comes out to tell me she is Dr Jacobs’s assistant and asked that Emma be part of a study and donates her thymus and all was explained so I signed. I am trying to remember the stitch as I learn she (KATIE) will be closing Emma. I struggle to talk and explain my fear of the scar and she assures me it is going to be fine because there is no stitch at all. She will do layers of stitches inside but will use glue and tape on the outer skin....She told me of a line which will be going into Emma's neck. An IV on a hand and both feet and a chest tube exiting at the point just above her belly button. She was very kind, informative and positive. I pulled strength through her and saw a man getting drugs from a safe like tool box...He then comes over to tell me he is the anesthesiologist for Emma. He explains the three levels he will be doing which is all a fog. I have to initial and sign....I am still holding Emma snug as a bug in the sling.. Dr. Jacobs arrives and with a huge smile says this is your great day! She looks fabulist and we are about to begin so if you would hand Emma to Katie we can get started. I stand hand Emma to Katie and forget EVERYTHING from the tour the day before. I am lost, I don't know what way to walk, what to do how to react. A very kind woman touches my shoulder and says or me to follow her so she can take me to the waiting room... I get there and she tells me she is going to come back every hour with updates. I go to the van to get my laptop as I see a woman on hers. I get back and set up in the waiting room and realize I am not in the same waiting room. I can not see an OR TV. I panic. Where have I gone, where is the OR waiting room.... I go to the security guard and he directs me to the next floor up. I was on 2nd and needed to be on 3rd. I get up there and she is still in pre-op... The woman comes back they’re started. ... four hours of self torture...Dr. Jacobs’s walks through the door to tell me couldn't have gone better. She told me to go get some lunch and then to PCICU to be with her.
