October and General Conference...

Although I look forward to General Conference and October is the most beautiful time on Cache Valley, this time of year is kind of hard for me. It's the anniversary of a "great and terrible" day for me. The actual date of Buggy's LTE (medical jargon for Life Threatening Event) was October 2nd, but it was the Sunday of conference, so I often remember the "traditions" regarding the day more than the date itself. So I compromised and decided to write about it today as I may be too wiped out to write about it on Conference days.

B was a beautiful baby. She smiled early and was so very social. She helped my body prepare and heal for her birth. It was the most amazing pregnancy in terms of talking to her and getting to know her before she was born. We never had any ultrasounds, but we had her female name picked out by the time I was 4 months along. I *knew* she was a girl. I also knew some other things about her. I knew that she had agreed to take on some additional challenges while on earth...challenges of the physical kind. I assumed I knew which ones, but I was wrong. I knew that she would need lots of extra care. I was kind of weirded out by the knowledge and so I didn't tell anybody about it until my due date came and went and my midwife (who is amazingly intuitive) said, "you're body won't go into labor. You're scared abut something and you need to talk to J about it." That propmpted me to tell my midwife abnd then my dear sweet husband. Neither one laughed or dismissed my feelings. They both discussed and supported me and hubby said so matter-of-factly "well, we've already talked about taking a child with special needs into our home and what that would mean for us in terms of treatment. Karin, we already know what we're going to do if that happens." He was amazing.

When she was born healthy, I was confused. I thought her problem was a specific birth defect (or several) and she was perfectly healthy. I even went to the ped the day after her birth so that he could check her out. Both of my other kids had heart murmurs at birth, so then I thought maybe that was it. When the doc listened to her, he also listened to her fontanels. He had a rare blood vessel malformation in his own brain that ruptured while he was on his mission. It was very traumatic for him and even though it is very, very rare, he still listens to baby fontanels in the hope of catching one early. I politely declined the gonorrhea eye drops and the hep shot, but allowed the vitamin K. I was planning to refuse all, and didn't know why I had caved about the vitamin K. He pronounced everything to be great. We took her home and fell in love. She was so calm, but she often cried in the evening. Her color was also very different from the other children. She looked very red. I wondered if her skin would end up to be the same color as her dad. We had planned to try ECing her when she was about six weeks old. I was too tired to try it from the beginning, but we had already caught a few pees.

After Conference on Sunday, I was nursing her in bed, trying to get her down for a short nap. I don't think she had slept well that afternoon. She was nursing, but fussy, like she couldn't quite settle down, you know that cry, right? All of a sudden, she completely unlatched and her cry changed to a piercing, very pain-filled cry.

And then she stopped breathing.

You never know how you're going to react in an emergency, whether calm or panicky, until it happens. I'm still not sure if I was as productive as I could have been. I wasn't thinking about that. I was just thinking I had to get my baby breathing again, and fast. I tried giving her a couple of breaths while I yelled for J to come. He was just in the next room, so he had no idea what was happening. I almost threw B at him and said "Breathe for her!" and I called 911. The operator was less than helpful. She seemed about a s stunned as I was ( I didn't realize until later that she was probably just a college student with likely none of the training that "normal" 911 operators have). She still hadn't started breathing and I knew from my own preemie CPR training that if she didn't breathe soon, we were going to need to start CPR. I tried to find a carotid pulse. There was none. I now know that you can't generally find a babies carotid pulse. You have to use a brachial (on the arm) pulse because their necks are too chubby.

I started CPR and told J to find a neighbor for a blessing. I didn't want anyone else near my baby. I didn't remember the number of compressions just that it was a high number as compared to adults. And faster. I took her out to the living room so I could lay her on the floor and we could find a neighbor. I left the operator hanging on the line because she didn't want me to hang up, but I knew B needed a blessing ASAP.

He found a neighbor whom we hardly knew and he came up and helped my husband bless our dying baby. I don't remember much of what was said, except that she wasn't supposed to die right then. What I remember was the change in the feeling fo the room. There was still pain and desperation, but now there was also comfort and love. It was almost as if a bubble had come around us and was cocooning our little family. The big kids started to get really concerned when they saw the blood coming out of B's nose and mouth and so I sent them outside and an insightful neighbor herded them up and took them to her house to pray and call the bishop. There were lots of people enjoying the wonderful weather outside so all knew that something was terribly wrong.

The wife of the neighbor who helped with the blessing said later that her husband came back ashen and said that he didn't think the baby was okay. he said, I think she might not be breathing. His wife assured him that probably wasn't true, but the neighbors slowly gathered up and huddled around each other waiting for news. That was when the police and eventually the paramedics came. When the police officer arrived, I asked him if he knew baby CPR and he assured me that he did, but I still wouldn't let him near my baby. I was the only one who could work on her. I never stopped the CPR. Her lungs had somehow filled with fluid and the air just wasn't making it in to her lungs, but I continued with back blows to try and clear some of it and CPR.

When the paramedics got there they cut her onesie away and started working on her. They couldn't get a single IV line into her and they sure tried a bunch. They shocked her a few times and when she was stable enough to transfer to the hospital they loaded her up. J followed in the car and i went in the ambulance. They had me sitting up front. Now that I've been in an ambulance countless times with B, I think they put me up there to keep me from getting too scared. They also had everyone in the back working on her. Since then, I have never ridden in the front. The whole time they were there, I knew that my life was going to have a big change. Our family was never going to be the same, regardless of what the end of the story was. That's a surreal feeling.

The ER did everything they could and there were people all over doing tests to figure out what had happened, why she had stopped breathing, they were also mighty quick about bringing in a social worker. I knew from past experience that that is a really bad sign. I already knew we were not in a good place. the Respiratory therapist was amazing and tireless in staying with B. Even when others ran around the room and took turns with her, he never left her side. The social worker then told us that if she ever needed one, he was the RT that she would choose. then she also divulged that he was her uncle and he would try his very hardest to make sure that she survived his watch.

They had to shock her several times while waiting for the life flight. When they were doing an MRI they found the problem. A cerebellar AVMwas the cause of all of this.

They wouldn't let either one of us in the helicopter as they needed all the room for hospital personnel, but our bishop drove us down to SLC as neither of us was in any position to be driving for that long. The neurosurgeon told us that only 10% of people survive the first 24 hours of an injury as severe as B's. He tied to be compassionate while still making the gravity of the situation clear for us. the PICU doctors were not focusing on her brain at all at that point. Her lungs were so ill that she needed a tremendous amount of support just to breathe. We never left her alone for about two weeks. One of us was always at her bedside.

I couldn't bear to leave her side even for a minute just in case something happened. I knew her life could be short and I didn't want to miss any of it. They kicked us out of the PICU during shift change, but we always had someone with her every other time. this was difficult because we had our two other children to care for and Rapunzel was still very young. She nursed all the time still. We had decided that we needed the children with us in case B died. We needed to be a family during this trial. My parents stayed with them at my grandparents home five minutes from the hospital for the first few days. As B held on, we realized that we could be at the hospital for months. They have a few RV pads for people there long term and my parents lent us their RV and that's where we all lived for that stay in the hospital.

Tht first day as I contemplated losing B, I would start to get lost in my sea of pain...I just kept thinking "No God could ask this twice of a mother. No loving Father in Heaven would ask a mother to lose two children." But as soon as I thought that, I would be swallowed up by such a feeling of peace as I had never experienced. J and I spent many nights crying in each other's arms, uncertain of the future, but knowing that, even in our grief, we would be taken care of. We both felt very much like the grief we were feeling was real and we needed to experience it, but that we were constantly being encircled in the arms of God. It's almost like a child when something goes wrong and your universe is falling apart and then mom takes you into her lap and just lets you cry. It still hurts. It's still real. It's still painful, but somehow there is an extra measure of strength, that whatever it is, you will face it together.

We had many blessings that month. J and I along with B and the other kids. J and I knew that this was B's trial. This was the new body that she had accepted before she came here. As much as this is painful for a parent to watch, this is not about me. It is about her and the things she will learn and teach others. I'm not a big believer in Saturday's Warrior doctrine, but I know that B agreed to do this and we agreed to help her.

Sometimes I wonder if people can tell by looking at her if she's special. I know, I can see, but can others? I think many who work with her and are watching for it can see. She has influenced many on her short journey already. She has gone with three missionaries (one uncle to Chile, one aunt to Japan and another uncle to Dominican Republic) as they needed stories of faith and strength, they would tell about her. People the world over have "met" her and prayed for her. At one time, I think we counted that her name was in about 15 temples, placed by different people in their spot of the world.

I am awed by the opportunity I have to be her mother. To facilitate her growth and bring her to meet those that she may be able to help.

Happy Life day, B!