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

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.

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 etsy.com 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

Reality Sets In

So, after a long trip to NYC (thanks to my mother in law), I am back to the Delta and back to reality. Oh did I mention that while in NYC, I had my purse stole with everything I own in it, including $1000 cash and a new camera?! On the way back, I received a email from a friend of mine that gave me her birth plan from Baptist in Jackson. She too, had a Trisomy 18 baby and was given the same prognosis. I have been wanting to see this plan since I spoke with her last. This, to me, was some direction and gave me something to plan on. For everyone who knows me, knows that I am a big "planner". I have always been one who likes to know what to expect and when to expect it. So, this birth plan, was a tenative guideline to what was to come, if my baby girl makes it to birth. This also, made me aware that there are many things I have yet to plan. I in turn, called my previous co-worker and asked her what pediatric hospice care do they recommend. Many of you may see this as sad, but the thought of being able to bring my baby girl home brings comfort to me. I spoke with a hospice agency that says they "deal with pediatrics" and this was comforting at first to think that there was someone in Greenville that did this. I am sorry, but I know that when it comes to my children and emergency situation, I may not be able to completely impliment all of my nursing skills to their full advantage. This is another thing that I pray for, strength wise.

After yesterday and visiting with this hospice agency, I am not sold on the idea of this particular agency. The director seemed so sweet, but the fact that there is a limited nursing staff, scares me. Really limited!!! I am still searching for a pediatric home health/hospice available in this area as of now.

 My heartache started last night when my oldest, Landon, overheard me talking to Lauren and telling her that we did not want the baby to suffer and we wanted her to go in peace. We were talking about choosing heroic measures or comfort care (which is what we will have to tell the dr on our next visit). Landon came in after my call ended and said "Moma, I agree with you, I want her to go peacefully too and not hurt". OMGosh, a 8 year old saying this to me? What was he feeling? I knew at this time, I needed to sit him down and tell him everything, as I did. He was saddend by all the news and even though I thought I was protecting him by not telling him, he suprizingly seemed relieved to know the whole truth. As he walked out of the room, I cried again.

Today, I walked into the daycare to drop Trace off and as I was walking out, a newborn baby girl was being picked up from her carrier to be handed off to the daycare worker. I instantly started crying before I ever could put my hand on the door. All I could think about was how unfair this is! I know that I should not question the Lord, and I do know that He has a greater plan than even I can see, but pure jealousy kicked in. All I could think about was how I would never get to see my baby girl walk, talk, play sports, get married or anything like this! How could this be? I have waited so long to have a little girl, with the cute little girly name, girly outfits, pigtails, mother-daughter talks, fighting over the wrong choices in boys, etc. I sat in my truck, waiting for the tears to pass and instantly went into the "sad/mad mode". I drove to work and proceeded to listen to Jeans for Genes on the radio. I started googling preemie outfits and the first thing that came up was bereavement gowns. Is this a sign of what is yet to come? I kept looking at this page in disbelief. I found the perfect gown for the wrong occassion. How unnatural it is to be planning a funeral before the birth of my own child?  <Crying again> How could I miss a princess that I haven't even lost yet? I know there are miracles that the Lord performs everyday, but today I am not feeling that warm sensation in my heart. I hang on to all the verses in the Bible that gives me hope and I read or recite them to myself multiple times during the day, but they are not helping today. Where is my strength? Where is my comfort? Where is my hope? Today I miss it all as much as I am missing my unborn child.

I have cried so many times today that the bottom of my eyes are sore to touch and my once waterproof eyeliner couldn't even withstand. I am lost. I have not felt this way in a long time. What I used to find OVERjoyment in, is now just a dull warmth in my broken heart. I know that we are going to see the pediatric cardiologist and prenatal specialist next Thursday, but right now, I do not feel any positiveness coming out of their visit. Bryan and I have discussed going to get a second opinion and I know that I want to, but what are they going to tell me different? I want to know that I have done all that I can for my little girl before I give up and I guess today is just a weak day for me. Praying for the strength I never knew I had and the understanding to accept the things I can not change.

"Faith is the confidence that what we hope for will actually happen; it gives us the assurance about the things we can not see".  Hebrews 11:1

Breaking the Ice

Ok, so more and more people have started inboxing me regarding what is going on with my baby. We have started a crazy ride with a diagnosis of Trisomy 18. We opted to have the initial AFP blood test that most every OB offers their patient. This is a screening test for chromosome disorders. Since I took it for my first two pregnancies, I took it for this one. Our results came back consistent with T18 and the next step was a visit to a perinatologist, "just in case". The AFP test can often be sensitive and can result in a false positive. Off to the perinatologist, Dr Perry, to see what was going on. After a targeted ultrasound, a amniocentesis was recommended. Dr. Perry told us that what he saw was a hole in her heart, a hole in her spine, her brain was pushed forward and her feet were clubbed. He said that all were consistent with Trisomy 18 and that we would have to wait 10 days for the results to come back in. For everyone who has never heard of this (like me), it is a chromosome abnormality where the 18th chromosome has 3 chromosomes instead of just two. This is not something that is inherited or something that was caused by something that either of us did. They describe this as a "freak of nature". 50% of babies diagnosed with this do not live to birth and in the ones that do, only 10% that do, do not live to see their first birthday. There are some children that make it as far as their 30's, but suffer from severe mental retardation. There are 3 types of Trisomy 18: full, partial and mosaic. All are life ending, but of course, full is worse than the others. Full means that every dna cell is affected and presents with more complications. Partial is basically that every other cell is affected and mosiac is random cells are affected. Day 12 came and so did the call. Keep in mind that I have been googling every t18 website and support group I could find, searching for hope and strength. I read a  entire book in 3 days, titled "I Will Carry You". For anyone who has lost a baby, I strongly recommend reading this book!! Back to the call that will never be forgotten. Dr P said that our Angel has FULL trisomy 18 and that although he does not advocate this option, he would like for us to consider termination. He followed by saying that he will follow up with us regardless of our decision. TON OF BRICKS hit my heart! He didn't tell me just that our baby has a life taking disorder, but that my baby WILL die. How many people can handle those words? I did not do well, even though he basically told us this 12 days prior. All I heard 12 days prior was "possibility" that she had it and if not then surgical intervention was possible to fix all her other problems. This was no longer an option, as he followed to tell us that no surgeon would touch her since she has t18 and that any surgery they did would be in vain and cause her more complications or even death. Here is where I felt like someone was tying my hands behind my back and sucking the air out of my lungs. How can I be a mom and a nurse and not do anything to help a baby???? MY baby at that. What do I do? Once again, off to the computer to research and gain more hope and understanding. Finding many children that live to a older age that a few minutes was difficult when my dr was saying no hope. Today we went back to him, only for him to reiterate exactly what he said the day before. Although, my strong husband was able to focus and ask the questions that my brain could not even think to come up with. He asked if we traveled across the US and found a dr that would operate on her, would that change anything? The answer was still NO. It would prolong the inevitable for a little bit, days, weeks or months, but during that time she would be in a lot of pain from the surgery and risk infection, leading to death. Every question he asked, still had the answer of NO. Please do not misunderstand me, I really like this dr. He is geniune, or seems to be. He told us what he would do if it was his baby girl and I really felt that he meant it. He did not rush us and he answered all of our questions gently and honestly. The ultimate decision was left up to us, to keep fighting for her or to terminate the pregnancy?????? Bryan, being the completely suportive person that he is has left the decision up to me. He wants the least hurtful thing to me. I decided to keep fighting for her and pray that she doesn't suffer because of my decision. I am no position to preach to anyone, but I feel that what is best for me and my family is to keep on keeping on and let the Lord do his work. If he feels that he wants her and does not see fit to heal her, then that is His will and I will have to accept that. Easier said than done, but I am working on it. I know that He has a reason for everything He does and that we may never know what that reason is. Like Bryan has said to me, that when we get to heaven, we won't care what that reason was, because we will be together and all the worldly things are left behind. How hard this is to swallow when this is my little girl that I have dreamed about having for as long as I can remember. I am truly blessed to have my little boys and I love them to my very core. I just have always got wrapped up in the girl/boy combo of children. I often find myself asking how will I stay happy when I know my little girl's outcome from a medical standpoint? I am relying on faith, prayer and the power of God. This is all I can do as I gather more information and become part of more support groups. I have to admit that my family and 3 of my really good friends are steadily pulling me up the ladder, when all I want to do is slide down and just cry at the bottom. I love you guys. I will stop here and leave by saying our next appointment is with a pediatric cardiologist at the beginning of March. On this day we will find out if she only has a hole in her heart or something more. We will also see Dr. P on this day and decide where we will deliver.....Baptist or UMC. Please pray for my family and my little Angel through this troubling time. Landon will be so confused and hurt and I know Bryan will be so upset. Please pray for strength and a miracle that our baby girl will not suffer. She is and always will be my Angel, whether on earth or in heaven. She is a true blessing. Please feel free to post a uplifting verse, poem, or anything that I can read for myself and/or family.