Tuesday, June 29, 2010
Monday, June 28, 2010
Tuesday, June 22, 2010
Tuesday, June 15, 2010
Sorry this has taken me so long to write. My mama is doing a good job of spoiling us and the days are just flying by. We had a great time in Michigan and have had a chance to see almost everyone here in Minnesota The pups are enjoying their time too, an almost endless amount of playing fetch and lots of cuddling time.
Last Wednesday. We started off the morning at Children's Hospital in Minneapolis seeing their perinatal hospice nurse coordinator, Jody and a social worker from her office. This was the hardest part for me, going in to see people and talk about the day our baby is born and will most likely also die. Jody was phenomenal. She was a midwife at some point before she took this job so she really understood the birth process and also had experience with mama's and their anencephalic babies. Between Jody and the social worker they offered to help me find a doctor in New Orleans (through their hospice network) that will be willing to work with me as Sammy grows and the pregnancy progresses. They even offered to coach the doctor or midwife and whatever hospice group they can find! They will do this without charging us or our insurance - amazing. Before we left they gave us a little quilt that volunteers made for people utilizing the hospice services and a baby book designed by a mom who found commercial baby books didn't fit situations like ours.
We grabbed a quick lunch and headed to our second opinion appointment. The sonographer was great in a different way this time. She knew it was a second opinion appointment so she was able to talk us through the whole ultrasound explaining what she was doing...I have no frame of reference for situations different than ours, but for us spending that time watching Sammy wiggle and move was priceless. I get to feel him moving every day but to see him was just great. She took lots of pictures!
The doctor (Dr. E we'll call him) that we saw after the ultrasound was great. He had to be in his 70's somewhere, started delivering babies in the 1960's and had experience with delivering anencephalic babies. Dr. B explained that when the "good" ultrasound machines started being used around 1975 anencephaly was one of the first diagnoses doctors could confirm and Sammy is a pretty clear case of this. We then got to spend the rest of our time with the doctor asking about his experience with pregnancies and deliveries of other babies like Sammy.
Next we went to see a genetic counselor. According to the doctors report from our first ultrasound in New Orleans, we had received genetic counseling. At some point during the doctors' explanation he mentioned it was not really genetically influenced and that was *apparently* the counseling. *thumbs down* So it was great to talk to a true genetic counselor about some of our concerns that the other doctors we had talked to could not or did not address.
Again I'll use bullet points to share the new information that we learned:
- Sammy is measuring right on track - 24 weeks at the time of the ultrasound, still growing (as is obvious by my growing belly) and everything except his brain is functioning normally.
- Sammy is camera shy! We couldn't get a good profile or face shot because he kept his hands and arms over his face. I was rolling all over on that table trying to get him to put his hands down or take his head out of my hip but nothing worked.
- Both Jody and the doctor agreed that in their experience organ donation just doesn't happen with anencephalic babies.
- Dr E has delivered anencephalic babies throughout his career. Mostly because back when he started they had little way of knowing anything was wrong with the baby until he/she was born. He said the pregnancy will mostly likely carry to term, Sammy may be smaller (5-6lbs) at birth, and he'll continue moving and kicking like any other baby before he's born.
- It seems there is no genetic testing needed? Unless we want extra piece of mind for future babies, they could do some testing after he's born...I'm still confused about this, it's not genetic but it could be? Genetics, poor diet, or siblings procreating will increase chances of anencephely...and chances of reoccurrence are 1% with a folic acid supplement (4-5g as opposed to the 800mg's that are in most prenatal vitamins) for 3-6 months before conception of future babies.
What's next? Return to New Orleans sometime this week. When we get back I'll start searching for a doctor or midwife in New Orleans and then a hospice group that can help us. Hopefully all that can be set up before I start back at school July 6th.
Personally, we're doing ok. I haven't looked up the stages of grief, I know there are around 5? Maybe? And from what I can tell they are not pyramid-like but rather more cyclical...at least I seem to be moving between sad and mad intermittently. I feel like in spite of all this we are able to enjoy introducing Sammy to family and feeling his movement. It's such an unreal experience
I heard this song today, for the first time in forever. I think I went to one of her concerts 8 or 9 years ago (makes me feel old to say that) and used to love this song. Of course it now takes on a whole new meaning and today it helped me get past some anger.
Ginny Owens - If you want me to - http://www.youtube.com/watch?v=QtNzOpKvPfw&feature=related
Thank you for walking with us through this, whether through prayers, emails, or phone calls, it means a lot to us.
Friday, June 11, 2010
Wednesday, June 9, 2010
Nothing has changed, baby boy is healthy as can be except for the anencephaly. It was great to talk to people who really respect our decision and support it. When I called to make the appointments I asked to see and speak to someone with this specific experience - they definitely delivered on that request! The perinatologist started talking about how "when the really good ultrasound machines came out in 1975" - LOL - and I knew he would have the depth of experience that would make me (us) comfortable.
We have been using baby boy's name for quite a while but wanted to wait to tell family in person before we announce it...tomorrow we will be meeting with the last group of immediate family so I will send out a more detailed email about today's visits and his name - maybe a picture if I can figure out how to make that work without a scanner.
Thanks again for all the prayers today, it was tough at times for each of us to keep composed and I'm sure it was your prayers that held us up.
Tuesday, June 8, 2010
Last Tuesday night we flew in from Denver after having a great time with Melissa's brothers and sister in law. It's amazing how seeing snow-capped mountains in the distance can change one's perspective on things. What a big and mighty God we serve.
After being back in New Orleans for about 24 hours, we hit the open road with dogs in tow headed for Detroit to catch up with some friends and family. It was great to see the city, and no matter how tough things may be in Michigan right now, it will still always feel like home to me. We spent a few days with my sister and her husband and my niece and nephew - It had only been about 6 weeks since they were down in New Orleans to visit us, but they agreed that Melissa's belly had definitely gotten rounder with our baby boy! I think that my sister was the only one who's reflexes were quick enough to feel him move - and we've determined that based on his communication through little kicks and punches that he loves Doritos (just like his Daddy!! haha)
Sunday, we went to our home-church in the city where Melissa and I met and got married. It's was great to see our friends and so many of the people who supported us from the time we were both single and unattached, through the time we were dating, engaged, and married. It just seemed appropriate and necessary that we share this stage of our journey with them as well. Not everybody knew our situation, and after just seeing that Melissa is obviously pregnant offered up a cheery "congratulations" - but there were also the few, that knew us a little better, that knew that there was more to the story. And it just felt so good to be taken in, and lifted up in their prayers. There's something about praying with those who know you, and love you, and have helped you become the people that you are - It just felt so confirming and assuring that as intimate as we feel among our beloved friends and family, just how much more intimate does God feel towards us? What we're going through isn't because we've been overlooked or forgotten about. God has been revealing Himself every day as we share our time and hearts with others, and I believe He will continue to do so.
Our time went by pretty quickly in Detroit, and before we knew it, it was Sunday night and we were back in the car (dogs in tow) headed for Melissa's mom's house in Minnesota.
Today we went to pick out some fabrics for the blanket and hat that Melissa's mom is going to make for baby boy... It was definitely the most emotional I've been while shopping for fabric. Ok, it may have been my first time ever shopping for fabric. But it was difficult, and exciting, and sad, and beautiful, to pick out what we're going to wrap him in on the day of his birth. I found it a little overwhelming, and was again, just amazed and in awe at the strength and grace of my amazing wife.
Tomorrow, we have an appointment with a perinatal specialist and will get another ultrasound from a doctor near the cities. Please say an extra prayer for us tomorrow. I know that Melissa will send out an update with the results of that appointment, so for now, I'll just ask you to please pray for our strength, and that we have a doctor that can help us answer some of our questions.
I've attached a few of the pictures that we took in Detroit with my sister, husband, nieces and nephew. We wanted to make sure that the kids were able to take a picture with their cousin :-)