Monday, May 24, 2010

P&S #2

First, I have to say thank you for all the prayers, emails, phone calls, and meals. Once again I received some greatly timed emails and texts this week on particularly hard days. I'm learning as I go but so far it seems to be day to day roll of the dice on how I will feel or make it through the day. Tuesday and Wednesday of last week I was feeling ok enough to be arrogant in thinking "this isn't as hard as I thought it would be" only to be knocked out with sadness Thursday, Friday, Saturday, Sunday...and this morning...

My mom got to New Orleans yesterday so she could come to our appointment this morning. It's been great to have her here. Dave appreciates that there is someone else ready to jump up and_________ (fill in the blank) :-) She will be leaving tomorrow and then Wednesday Dave's parents are coming to New Orleans so it will be a busy and quick week.

We met with my OB this morning...and had to wait in the waiting room first. I was feeling more on the ok side than sad side headed into the building but once in the waiting room it got really tough. And it was empty today! But they play this video with baby care trivia and all I could think about was how I KNOW THE ANSWERS. I *deserve* a chance to raise this baby!! I won't get to worry about slathering sunscreen on my baby boy's skin or what brand of diapers is best. A walk to the exam room that used to be filled with excitement and anticipation just made me cry harder. We (Dave, my mom, and I) had some time for me to regain my composure before the Dr came in and we started in on the questions. I reminded myself that people were praying like crazy for this appointment and for us, I reminded myself that is ok to be sad and have a hard time - it's part of the process. And I tried to praise the Lord because that is where I'm finding my comfort, in praising and worshiping the God that loves me anyway. Here is what we learned in the simplest way I can think to type it, bullet points.

  • baby's heart is still beating, a strong 148 bpm
  • I have not gained any weight since the ultrasound (thumbs up!)
  • travel is safe
  • my body will tell me when/if the pregnancy is a health concern for me, until then I will be ok and safe in carrying our baby
  • the dr is leaving all decisions to us and says there is no right or wrong choice
  • baby could continue growing according to a standard schedule but often in anencephalic baby cases they are smaller
  • organ donation could be a possibility
  • my dr has never delivered an anencephalic baby which doesn't matter because today she told us she is going to stop delivering babies August 1
I was praying for clarity on what next steps to take after this appointment. I guess I could say I wasn't totally comfortable with some of her comments after the ultrasound and just wanted some sort of indication of where to go from here. I'm so glad as she makes her comments on how this baby's fate has been decided and the decisions are up to us, that I know the Truth. This baby's fate *could* be changed at a moments notice and the decisions are *not* up to us! We have a higher hope and know the Ultimate Healer!

So I offered nothing but a nonplussed "huh" when she told us she wouldn't be delivering babies after August 1 (my due date is Sept 30). Especially after finding out she has never delivered a baby like ours - which isn't really her fault since only 1 in 1000 pregnancies result in a baby with anencephaly and no one seems to know how many of those women carry a baby to term as opposed to terminating the pregnancy. AND New Orleans is a small town disguised as a city...with not always the best health care (in my opinion)...and is still recovering from a devastating hurricane/flood..

Talking with my mom over the last couple of weeks and reading about services provided in other areas of the country has led us to the idea of getting a second opinion in Minnesota while we are visiting there. Mom asked the Dr about perinatal hospice and she just stared like it was beyond her to put those words together and figure out what that term could mean (end of life care for the babies and their families). Mom and Dave had read a little about organ donation leading up to this appointment and found it be may be a possibility and we would like to get better answers from someone (or some facility) that has some sort of experience with cases like ours.

And at any time it could all be over. So we wait. I will continue to go in for appointments every four weeks basically to ease my mind that our baby is still alive and growing. We will try to get a second opinion appointment at Children's Hospital in Minnesota (the only provider in MN with extensive enough services that is covered by my current insurance).

What are some specific prayer requests? - I'm so glad you asked :-)

  • Well, in the middle of all this, I am changing jobs. July 6th I start at a new school, teaching a new grade. Right now my biggest concern with this is having an easy transfer to a new insurance. Pray that we will know which insurance to switch to (my new schools, or going on Dave's insurance) and that it will be a smooth transition.

  • Pray for the doctor that will be delivering this baby! It could be my current doctor if an emergency pops up here in New Orleans, a random other doctor if an emergency pops up during our travels, a doctor from my current doctors practice, or some other doctor if we are able to do organ donation...the Lord knows who will do let's pray for His hand working in that doctors life :-)

  • Pray with us for safe travels as we take our baby around the country to meet his family and friends

  • Pray with us for my health and safety as the baby grows

  • Pray with us for wisdom on the next steps to take

Monday, May 17, 2010

prayer and support email #1

It is with tears in my eyes and the heaviest heart I can imagine that I write this. Last Wednesday we had our anatomy ultrasound, the usual midpoint check on the baby's development. The results were devastating. Our baby boy (yay blue!) was seen to have severe Spina Bifida and anencephaly (the top 2 hemisphere's of his brain are not there). The doctors' sent us home to grieve, giving us no hope. They say he has no "life" and if he makes it to full term he will not live long (although they wouldn't say how long/not long). We are heartbroken. We believe the Lord has numbered our baby's days and as long as it is safe for me, I will carry him and we will share these days.

We are still rejoicing in the movements that we saw with our untrained eyes. We heard a heartbeat and saw the little guy moving his hands, arms, legs, and feet. According to the doctor's this is involuntary movement...we kinda don't care what kind it was, it was amazing to see. We rejoice in the little kicks he provides throughout the day. This morning I rejoiced when I had to bend over more at the kitchen sink because he's growing, pushing my belly in the way when I do dishes.

Dave. I don’t know how to put in words what he means to me right now and how well he is taking care of me. I am blessed, humbled, and honored to be married to this wonderful man of God.

What’s next? Waiting and travel. I have a regular 4 week appointment next Monday with my OB doctor where she can hopefully answer some of our questions. My mom is coming into town for that, Dave’s parents are coming after she leaves, we are heading to Denver (family) after they leave...and then we will head to Minnesota for a week or so in June.

Please pray that my doctor will be understanding and supportive of our decision to carry this baby as long as possible. She did mention having a patient recently carry a baby with similar problems to term because of “deep faith”. So pray that we can be a witness to her as well.

Thanks to all the people who have been praying! I give God all the credit for holding us up during this time, He is answering those prayers. I know there will be healing too. For this baby or for Dave and I, but there WILL be healing. So please pray with us for that healing. I have received some greatly timed texts and emails, reminding me of the prayers that are surrounding us, thank you.

God's biggest message to me has been how all encompassing His love is for us. At first, the music and scriptures were disheartening...I felt like I had found a place where God was not these things. Thankfully my mom was able to process for me that God was *reminding* me about his lovingkindness being everywhere, not taunting with me. I even woke up from a nap that first day with a song in my head "it's gonna take a lotta love, to make it through somehow". Since then I am clinging to His promises.

Psalm 32:10 “Many are the sorrows of the wicked, but he who trusts in the Lord, lovingkindness shall surround him.”

Here is a link to an iMix of my current playlist of music...I will also link to a youtube video of an artist that I found right about the time this pregnancy started, “Your Hands” by JJ Heller. Along with scripture, music is a great coping tool for me and I know some of you may be interested in the music that is keeping me together right now.


"Your Hands" by JJ Heller :