Matt called our caseworker – he yelled at him. I talked to the caseworker – this is where I lost total respect for him – he told me that this baby was going to break us. He said we didn’t know what we were getting ourselves into….. Uh yeah we did! What is the difference between this and if I would have delivered Micayla? – she was ours!! Why didn’t people get this? WE WANTED HER NO MATTER WHAT!!!
We then talked to Susan’s caseworker. She told us that we had to put it in writing and sign that we were taking full financial responsibility for Micayla’s care and that we knew that she might die. We went home, wrote, signed and called our insurance company to get proof that they would put her on our insurance. We went to the agency and presented it to both caseworkers. This is when we found out that Susan had wanted to sign the papers on Wednesday but our caseworker wouldn’t let her because he didn’t know if we could afford Micayla….. I am sure to some that might seem reasonable but to us it was crazy!!! Because Micayla’s outcome was so unknown – Susan’s caseworker had us work out a visitation plan for Susan and her mom.
On Friday morning, Susan was allowed to sign the papers. After she left the Agency they called us and we went in to sign papers and pay the remainder of our fee. Because of the medical bills the agency director substantially lowered the fee that we had to pay.
Friday afternoon – placement papers in had, we went to the hospital. It had been 48 hours since we had seen Micayla or heard anything about how she was doing or what they were planning. First we had to talk to the social worker and then we finally got to go and see our sweet beautiful baby girl. We were officially her parents.
When we got to Micayla’s bedside we asked to speak with the doctor. We wanted details, details, details. Since it had been 2 days since we had seen her or heard anything we wanted to know what they had been doing and what they were planning on doing. One of the Residents came and talked to us. She told us that they had completed the necessary tests that day and that she would be having open heart surgery on Monday. Oh my gosh! Can you imagine? Open heart surgery on a 9 day old baby.
That night our parents came again to see Micayla. My mom and I were at her side when she stopped breathing. They had to keep waking her up to get her to breathe. When they had done the MRI earlier that day they had to intubate her and sedate her. She was just having a hard time breathing on her own after that. They intubated her again that night. I was afraid to see her with the tube down her throat. Matt went and saw her first so he could prepare for what was going on. It actually didn’t look to bad – not like how they make it look on TV, plus tiny mouth = tiny tube.
Saturday we spent all day with her. I got to change her diapers and sing to her. They had to give her a medication to keep her “PDA” open. The PDA is the part of the heart that bypasses the lungs when the baby is in the womb then it closes soon after the baby is born. Her’s needed to stay open to help her blood flow and have oxygen. The medication they told us makes you feel achy all over – they likened it to the feeling of a sunburn and how it hurts to have anything rub against the skin. It was so hard to not rub her soft skin. She was still intubated and they planned on keeping her that way until sometime after heart surgery, her body needed the rest.
Saturday we met with the Cardiologist. He explained in pretty good detail the defects in her heart. She had an ASD (hole between the two atriums), a VSD (hole between the two ventricles), her aorta (the main vessel that transports blood to the lower half of the body) was interrupted (basically not attached at a point up near her neck), the Aorta came out of her heart and went right instead of left, and they needed to close the PDA. He told us her chance of survival was 60-80% --those are good odds right? But not when you consider that there is a 20-40% chance of death.
Sunday we had several family members and friends visit. Matt and I took turns escorting them back to meet our sweet girl. It was an emotional day, how do you prepare for what is coming? Matt and talked a few weeks later about the fact that we were both in our minds planning her funeral – we didn’t talk about out loud.
We met with the Cardio-Thoracic Surgeon - he was the actual doc doing the surgery. He was very serious - which is good. He spoke quietly. We were very impressed with him. Come to find out later that he like the HEAD of the department -- the best of the best!!
My dad brought their trailer down and parked it in an area of the parking lot set aside for RV’s. This became my home away from home for a while.
Sunday night the nurses and respiratory therapist decided that I should get to hold Micayla before her surgery. This was a daunting task for them. It took them about 45 minutes to get her ready and the whole time I held her the RT was right there just in case there was a problem. We later found out that they had done this because none of the nurses thought she was going to live. They wanted me to be able to hold her before she died.
We kissed her goodnight and went home knowing that we would be back early in the morning to see her off to surgery.
To be continued....................