Thursday, December 8, 2011

Today's appointment update

Dear Avery,

      We just got back from the maternal fetal medicine doctor.  We were with Dr. Weeks again (there are three doctors in the group) and we really like him a lot.  Some people have a gift for sensitivity and eloquence in difficult situations, and he is definitely one of those people.  Somehow, bad things seem much gentler coming from his mouth.

       He told us that your chest is still very small. Your ribs are very short and thick and they slope inward which doesn't leave very much room for your lungs. He can tell us with certainty that your chest will not get better, so our best case scenario is that it will stay the same.  He said your small chest will definitely affect you, but left it at a 50/50 chance of making it out of the hospital alive. 

     I told the doctor that I have been having consistent contractions since week 18.  He checked everything out and said that at this point things are where they need to be and I am not showing any apparent signs of labor.  However, he said that your condition definitely puts me at risk for preterm labor.  If that were the case, they would not be able to save you.  I would deliver at Baptist East and we would spend as much quality time with you as God will allow before he takes you to be one of his angels.  If I can make it close to term, and your chest situation has not worsened, I would deliver somewhere else (probably downtown) with a high tech NICU and many specialists there waiting for your arrival. 

     Dr. Weeks told us that you will definitely need respiratory help, whether that be a ventilator or an ECMO heart and lung bypass machine.  If they can stabilize you with one of those measures, we would consider rib lengthening surgery in the following weeks. 70-80% of babies do not make it even after these measures, but we would try everything that we can for you to be in that 20-30% of survivors if there is any realistic hope left for you. Dr. Weeks is going to contact a fetal surgery team in Cincinnati to assure that there is nothing that they can do for you now, but he said that the rib surgery is unprecedented (from what he knows) and would be far too traumatic for you to survive in utero.  I trust him that he is guiding us in the right direction.

     The lemon sign is still prevalent in your head.  It is apparent that whatever anomaly is causing the bone deformation in your limbs and chest, is also affecting the growth of your head.  He said that this could potentially be a concern down the road (stunted brain development could lead to a stillbirth,)but that their main focus is still on the growth of the chest and its ability to house your organs.  He also mentioned that your kidneys are measuring 1 and 1/2 times the normal size and that it could be an indicator of a genetic condition (possibly Down Syndrome) but that it is too early to tell, and quite frankly that would be the last of our concerns at this point.
     I feel better having seen you again and I am relatively calm and composed given all of the information that we now have.  I am going to try and take it easy and stay healthy to give you any chance that I possibly can to make it in this world.  You are so perfect up on the screen.  Your heart has all four chambers and it beats just like it should.  You move around like a normal baby and you yawn and smile and kick constantly.  It is hard to believe that there is anything wrong with you when I see the picture of perfection before me.  You are truly beautiful baby girl and I love you more than you know!
                                                            Prove us all wrong Sweet Pea,


  1. I was just sent your link over the bump. I'm so sorry that you are facing this. Please seek out as much support as you can. All the very best in this time.

  2. Thinking about you today and praying for you Jeff & Avery!!! Love you! Always here if you need to talk!!

  3. My frame was not hidden from you when I was made in the secret place,when I was woven together in the depths of the earth. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. - Psalm 139: 15-16

    I came across this verse today and thought of you and sweet Avery - I hope you and Wanda are enjoying her visit! Love you friend!