Good News and Bad New

Well as I sat in the triage room at Dr Bofill's office, I can see out of a small window straight into the gift shop. I can see the blue and the pink door bows that announce "I've just had a little boy or girl". How sweet, I remember thinking. Dr Bowfill's ultrasound tech called us in the dark room and started the procedure. Great news! The place on her lip that looked funny to me last week, was nothing! Whew, no cleft lip. Fantastic! Her little feet that we were initially told were clubbed, are not! Wow, another accomplishment. Dr. Bofill enters to finish the ultrasound and goes on to do a more in depth exam and tells us that the hole in her spine is indeed spina bifida and is still present as is the hole in her heart. I have to admit that I truly had a feeling that these were not going to be a issue anymore and that they would have closed by now. I asked him what were the chances of them closing on their own before birth and he said "nonexistent". What a blow!? This set me back a little. After the ultrasound we sat down with my long list of questions and Dr B. I asked him things about how long she would stay in the NICU? How long after her birth would they have to have before they closed the spinal hole? What chances do we have to have another child with the same condition? I have to say he answered every one of my questions, just not with all the answers I wanted to hear. He told us that only 2/3rds of these babies are born alive. Immediate nausea kicked in. He said that most of Trisomy 18 babies never leave the NICU. He also said that these little babies dont weigh 5 pounds at birth. I did very good fighting back tears. It is not that i havent read this before or heard it, but it was just different this time. I felt deflated. He said that they would close her spine, if she lives, within 24 hours of her birth. What a bittersweet answer. The chances of us having another one with the same condition is less than 1%. This is good news kinda. See we are living the less than 1% chance right now, so for anyone else these odds are great, but in my eyes they are high. He also said that decrease the greater risk of her being stillborn that they would section me at 37 weeks. This would allow her lungs to be fully developed enough for her fighting chance, but reiterated that most of these babies die within the first week because there cells are so screwed up that their little bodies can't function. (tears)

We went on to see the pediatric cardiologist for Ava Grace's echo. Guess what!? She only has a VSD (hole in the lower chamber wall of the heart). This is good since they originally thought it may be more. The pedi cardiologist said that a lot of "regular" babies have a hole in the heart and that this particular defect would not be the reason for her demise. This may sound bad that I'm happy, but her heart is not a concern until she is at least 3 months old. Whew! Another bullet dodged.

Next we saw the genetic fetal counselor. She was really sweet and thorough. She brought out pictures that explained Ava's condition down to the T. Literally. She went on to give us some percentages of reoccurrence and some of our options if we decided to have other children. She too reinforced that only 10% of these children are ever able to go home and the ones that do, go home to die. She explained that I should not feel like I'm giving up on my little girl by accepting the prognosis. That is exactly what I feel like I am doing, I told her. I am not in denial, I know what her future holds, but if I give in to her prognosis now, then I will have a miserable 14 weeks that's left. She was completely understanding and said exactly what I've been telling everyone I was doing. "expect the worse and hope for the best". Is there any other way to be? Not for me. I feel my little girl everyday. The dr told me that we had passed the point of highest concern for fetal death, but that she could still die at anytime. I feel like a rug that has been beat over and over to knock the dust out of it. I hear everyone's negativity about this and I know that these are all proven statistics, but I don't want to hear the . Say something positive! The genetic counselor said that there is a palliative care team to meet with that can comfort me and she assured me that the NICU would take every measure to make sure that Ava Grace would not hurt. She said "I know y'all don't want her to suffer". For the first time I heard myself respond out loud with "no I don't. I would rather her pass peacefully before birth than to suffer after birth". How cruel could I be to say that?! I immediately cried. I miss her already and I can still feel her kicking me, even right at that moment. She was telling me, mommy I'm still here. I know I should be happy, but why am I not? I felt so alone in that moment, even with Bryan sitting right beside me. I remember at one point crying and saying I guess I need to stop buying clothes for Ava now, to Bryan. His response was, no you do what makes you happy. Right now the only thing that would make me truly happy is to hear it is all a bad dream and that Ava is fine.

The next step is to see the palliative care team. This is a team of counselors and dr's that provide comfort care to the baby and the family. They make sure that all of your wishes for the baby are carried out, from birth pictures to funeral arrangements. From what we have been told it is to help with transition of your baby from birth to her heavenly arrival. This was a drastic place to be in, that unfortunately I have had time to plan on from the first diagnosis. It still don't seem real. Wake up Amy, wake up!!! Bryan opps to pass on talking to them today. I honestly am glad he said something, cause I'm not sure I could have handled it today. I've talked about her funeral with someone close to me, but not with strangers. The thought of someone touching my angel to put her in a pine box infuriates me! I want to hold her and protect her from all the hurt, but I know that God is in control and what He has already chosen is what will be. It is hard to swallow that without choking, but I'm trying. Please continue to lift my baby girl, Ava Grace, up in prayer. She had made it this far, so maybe the Lord is going to let her Moma and family see her and get all the love they can for a moment anyway. I can only be thankful for today and pray for tomorrow.

The Lord God will wipe all tears from all their faces.
-Isaiah 25:8

Proverbs 3:5-6

5 Trust in the LORD with all your heart
and lean not on your own understanding;

6 in all your ways acknowledge him,
and he will make your paths straight.