It's Finished

Today we went to the children's hospital for Aubree's autopsy report. I nearly burst into tears walking in to that place, but managed to hold it together. I was able to see the same doc that had treated me and the same neonatologist that was with us when Aubree was born (he personally took her back to the children's hospital for the autopsy when we left the hospital). Seriously, I have never had such a wonderful caring team of doctors before. The actual autopsy showed that she passed away due to her heart stopping, which is what we had suspected. It was only beating at 37 bpm the last time we had seen her on ultrasound so this wasn't a surprise. They did find some other things wrong with her heart that couldn't be seen on the ultrasounds and her other organs had issues related to her heterotaxy. But nothing really significant in light of her more complex issues. The placenta tested fine and there were no clots or infection found that would have contributed to her passing or cause concern for future pregnancies. Most of my questions were for the geneticist. She said that Aubree got two defective "nodal" genes, one each from DH and I. The nodal gene is what tells things where to go early in development when there are just a couple of cells. Having one defective gene is apparently really common, but having two could have caused Aubree's severe heterotaxy (but they can't be certain since apparently there are 60 genes that determine "sided-ness" and they only can test for a few).

It was recommended that DH, Aly, and I get heart echos and ultrasounds of our abdomens to see if any of us have misplaced organs. If we do, our chances of having another baby with heterotaxy are about 50% since DH and I both seem to have this defective gene. If not, then our chances of having another baby with heterotaxy go down about to 5%. Even if we do have misplaced organs (meaning we also have heterotaxy), most forms of heterotaxy are compatible with life and things would most likely be just fine. The chances of having another baby with issues as severe as hers (the worst scenario of heterotaxy known) is still around 1%. So we will do the tests - mainly because we have reached our max OOP and I really want to know that Aly is ok, and that DH and I are ok. But in all likelihood we won't have to worry about this issue again. Unless we hit the freakin' genetic lottery. In which case, we should also hit the real lottery just to even out the karma scales.

The doctors all said they can't tell us when to try again, but that they all personally think we are good to go whenever we feel ready. And they said that my regular OB can schedule all my ultrasounds at CMH in the fetal health center and they routinely assist with care for healthy babies after situations like ours. So we will for sure do our 12-week scan and 20-week anatomy scan there, with an additional heart echo around 24 weeks just to be completely sure.

I went in to today with a really heavy heart, but I walked out of that hospital with a sense of relief and a feeling of closure. Her due-date was yesterday, and her autopsy today. Aly was born the day after her due date and I'd had in my mind that Aubree should have been born the day after her "due date."  The autopsy report feels like the last official thing we did for Aubree as her parents. Now life can move on.

Two Months

I've been absent from here for awhile. I went back to work three weeks ago and life has pretty much resumed it's normal pace. In a weird way it seems like DH and I are back to where we were at the beginning of the year. We set out this year with the goal of having another baby, and even though we had her it seems like she never was here. Kind of weird to be starting again nine months later and feeling like things are right back to where they were.

I've really been handling things well so far. I could see new little babies or pregnant ladies and not run crying from the room. Oh sure, I felt a tinge of sadness, but it was ok. But as we got closer to October, I started feeling more & more sad. Today was Aubree's due date, and we got the call last week that her autopsy report is in and the doctors want to meet with us tomorrow. We should be going home with a new baby, not sitting in a conference room discussing her autopsy. I am hoping that we don't hear anything we didn't already know about her. I hope to hear that Aubree passed from complications due to her severe heart defect caused by her heterotaxy, and that Mike and I did all that we possibly could for our little girl. But babies with heterotaxy usually pass away in the 1st trimester, so part of me is really worried that this is somehow related to my first miscarriage and that something is wrong with me that keeps killing my babies.

This week has been a really bad week. It started on Tuesday, and as the week progressed I got more & more sad and angry. Sad that my baby is not in my arms like she should be. Angry with the world for going on with life like normal. Sad that it has been two months since I felt her kicks and rolls, her dancing to daddy's music, her sudden jolts and kicking at the sound of my alarm in the morning. I miss the giant belly that made it impossible for me to sleep, or sit, or walk. And vainly, if I can't have the baby, then why the hell do I have to keep the smooshy tummy afterwards? Yet part of me loves that stretch mark on my stomach that I know was left by Aubree. She WAS here. She WAS real. She IS my baby.

Someone asked me this week if I was "all better." Another person asked Mike and I if we would have more children. These really threw me for a loop. I don't know if things will ever be "all better." Part of me will always miss Aubree. She is our daughter, the same way Alyvia is. She had her own personality - she loved green chiles and dancing the night away in the desert air when we went to visit great grandpa in New Mexico. She loved to dance while Mike played the guitar and sang, yet she always stopped as soon as he would place his hand on her. How she knew the difference between his touch and mine I will never know, but she calmed immediately whenever he would speak to her and put his hands on my tummy. Aubree liked when I would rock with Aly on my lap and read bedtime stories, but she would kick Aly for encroaching on her space. Aly loved to pat my belly and talk to her sister.

Having another baby won't make things all better. No one will ever replace Aubree. And to be honest, the thought of going through another pregnancy is absolutely terrifying. Through the wonderful support groups I have found over the past year my eyes have been opened to just how many things can go wrong with a pregnancy. And I've come to realize just how very little I can do to prevent those things from happening. Most fatal defects are complete random chance, and not the fault of a mom drinking caffeine or eating a lunch meat sandwich. No matter what rules there are and how careful a person is, the truth is that the scariest and most lethal defects are just random chance. If and when we decide to have another baby I know that facing pregnancy itself will be facing one of my biggest fears. It will be the choice to allow myself to be put in the position to lose everything again, and to be willing to face that risk in order to hold a living child in my arms.

And yet, even knowing the outcome, I would choose to walk this road again.  I love my daughter and I am so thankful for the time we had with her. I am thankful that we life in a time when we could discover her challenges and prepare to face them. We knew that each day was a gift and we tried to cherish each one. Our 31 weeks with her far surpassed everyone's original estimates. We were able to spend an additional three months with our daughter, and we know that she directed her story and went on her own terms.

Aubree, I hope you have really enjoyed your last two months in Heaven. I hear that time is not the same there, and I hope all you know is a time when we are already together with you.