Friday, March 9, 2012

Dear Ava Grace

My Dear Ava Grace, Today I still had not snapped out of my disappointment that I felt from yesterday. I woke up to two beautiful, healthy brothers of yours. They wake me up most every morning by crawling into bed with me, if they aren't already there. Don't worry, I have you a nice little spot right between me and daddy. Safe from all of the world and protected as you shall be. I did my normal routine, get ready for work, get your brothers ready, take them to their destination and off to work I went. A few of my concerned co-workers asked about you and how your appointments went yesterday. I described our visit in short details and even the little misunderstanding your dad and I had. I still could not talk about all the things entailed with meeting the palliative care team without crying. My heart is just sad. My work day is only a half day today and as I was leaving I decided to call your great grandma Betty. She is a God fearing Christian with a heart of gold. I feel that there are not many people that are a REAL as she is and as good of a lady. I explained to her all the changes in diagnosis that the new perinatologist gave us and how most of the initial devastations had been eliminated. All but one. The t18 was still very much present and would not be changing. I explained to her how all of the physicians and counselors drilled into mommy's head that you would not make it and that your quality and quantity of life would be extremely poor if you made it past a week. They want us to plan your funeral. Although, I have to admit, after the first dr's appointment and how they made it sound that if I have you inside me for another week then I am blessed, I already had. I have a list of how things should be, in my eyes, for your funeral. Your great grandmother gave me a verbal kick in the pants and explained to me that all of the things the MD's are saying are blessings. She says that I should be thankful that the Lord is giving us small blessings to help hold on to our faith in you. She says take one day at a time and treasure the moments I have with you. I truly am trying baby. I want you to know that. It is hard for me to think of just one day without you or that any move I make could be my last with you. I live in fear. Fear of the loss, fear of the pain, fear of you not knowing exactly how much your daddy andI love you. Your oldest brother, Landon, had to leave for his daddy's house today and he told everyone bye, even you. He kissed my belly and told you "bye Ava Grace". You are already so real to us and the thought that this house may never be graced with your presence is all to frightening and tramatizing to me/us. I won't ask the Lord "why?", because I know he has a plan. I know that he is going to use this experience (regardless of your outcome) to the good of us. I also know that He can take much better care of you, than I ever can or will. That does not mean mommy won't give or do anything for you. In Christ, you are whole. You will not suffer and you will dance amongst angels. A fantastic preacher told us that there is no reason for you to be baptized, because you could not be more perfect in His eyes as a child and that you will not know what is going on anyway. I have to say that I still want this for you. I want to be present and holding you when you are baptized unlike your moma has been. I want to know that you are cleansed. I'm oh so confused baby girl. I look up for direction and pray more often than I ever have, but still feel like I am not enjoying my time with you. I am greedy and want more with you. I am ashamed of that, but proud at the same time. Do you see me chasing my own tail like a puppy? A puppy that you may never get to have. Oh the things I want you to experience and have. How do I do that for you? Is it meant to be? Just know that you are my baby girl. The one I have wanted for so long and the one I will love and cherish forever. You have made and filled a place in my heart that nothing or nobody can ever take away from me. I will try to be stronger for you and try to fight harder for you, just as you are fighting right now. I will try to not focus on what I don't or won't have with you and try to focus on what I have presently. You and the Lord are my strength. I will do anything for you. I will carry you as long as I can and pray for you daily. You are mommy's angel and for now I have you here on earth with me. That is more than most will ever have. Some do not have the chance to watch their baby grown in their body or form the bond that you and I have. For this I am truly blessed. I promise you that I will try to be a better person in the Lord's name. Mommy has strong love for the Lord, just as you will. I will continue to read to you and sing to you. Your brother's like this too, even though mommy's singing voice is less that average. I love that you kick me when I cry. This is your little way of letting me know that you are kicking me into gear and the right frame of mind. I love you and even if the Lord takes you tonight, please know that you will never be forgotten or replaced. You have mommy's heart and love baby girl. You are my sunshine. I love you. Mommy

Thursday, March 8, 2012

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.

Wednesday, March 7, 2012

Finally, some hope of direction

In the past week I have had two people ask me, "why do you buy things for Ava Grace when she has a terminal illness?" A good friend of mine, who is going through a situation similar to mine, answered this question perfectly. The people that ask this question, definitely are not in the same situation that we are. You look at an outfit and say, "oh that's to old looking for them right now" or "that will suit them better later". For us, we do not have that option, today may be our only day we have with our little one. We can not wait until next year to buy them all the things we want them to have or wait to do the things we wanted to do with them when they were older. So if you see me buying a lot of clothes or toys off of facebook, know that this is what gets me through the day. Just a little hope that my little one will be big enough or live long enough to be able to fit into this outfit or play with this toy. By the way, I have found a fantastic store on whose owner is so accomodating. Please look it up, it is called Snugglebug Baby Boutique. They have so many darling things, I could truly get in trouble with my husband over this one store! I am also making a list of all the things I want to accomplish with Ava Grace. I want her to be baptized, as well as myself and her brothers. I want her to take a bath with her moma (me). I want her to experience sun on her face. These are just a few to name. She has already accomplished one thing, which is go to New York City. She doesn't know it yet, but the big city is not a place for her. She didn't move hardly the whole time we were there, so I don't think she liked it. :) She is country at heart already. I figured out why the Lord allowed my purse to be stolen there. It was because Ava's moma would have hit all the baby boutiques and spent her money there instead of giving it to someone who needed it much more that she (undoubtedly) hehe. In other news, I have spent the last week searching for a hospital/physician that will accept Ava Grace if she is stable enough for surgery. I have heard my perinatologist tell my husband and I that babies with T18 do not generally do well enough for surgery, but here is my dilemma, my child has a hole in her spine and if it is not closed in certain amount of time, she has a greater chance of developing spinal meningitis. I don't want my child to die at all, but I definitely don't want her to die of something that can be surgically corrected, when she has survived the fight of T18 in itself. I mean that is a GREAT accomplishment in itself. Anyway, according to my perinatologist, there is not a physician that will do surgery on a T18 baby in Mississippi. Well guess what?! I found one! After calling to Arkansas Children's Hospital and Birmingham's Childrens Hospital, both of the genetic counselors spoke with their physicians and sugested that I see Dr. Bofill at UMC in Jackson. Who knew that there was someone so close? How great! Not only that, but Alabama also said that after speaking with their surgeon, that their team would fly here, work side by side with UMC's team for delivery and fly Ava Grace to Birmingham for the surgery. Holy cow! A miracle in itself. Yay!!! So my next step is calling Dr. Bofill and setting up an appointment. I called him and got his receptionist who immediately put me on the phone with his nurse. His nurse in turn puts me on the phone with him. Wow I got a dr on the phone! He said that they have previously performed surgery (successful may I add) on T18 babies. Yay again! So the dr wants to see us tomorrow morning. :) Tomorrow we see Dr. Bofill with his team of surgeons and set up a game plan. We also see the pediatric cardiologist and Dr. Perry. I know this may sound crazy, but I am anxious. I am ready to have some direction. I feel as most of this pregnancy has been full of I don't knows and negativity. For the first time I have some promise of a plan. Just remember if you are struggling with something in your life, give it to God and realize that your problems could be much worse without him leading you in the right direction. Look up, not down. "but blessed are those who trust in the Lord and have made the Lord their hope and confidence." Hebrews 17:7