A little down, but not out

Today my mother-in-law and myself traveled to UMC to preregister for my c-section on Monday. The day is nearing quickly. Miss Ava Grace has been moving so much today. It was so reassuring. UMC had no idea why I was there, who my dr was or even would be, what was wrong with my baby, etc. I was so distraught. It truly worried me. After many phone calls and research, they found me (wrong spelling of my last name) and why I was there. WOW! I sure hope they have their stuff together more on Monday. After registration we went to have my maternity pictures taken. This appointment was long passed due. For anyone in the market for some fantastic pictures, please look up Jennifer Rutledge Photography. She is located in Brandon, MS. She is also on facebook, so you can look her up. I have to admit that she has gone above and beyond to help me in this crazy time of my life. She is part of a organization called Now I Lay Me Down To Sleep. It is a organization that recruits local photographers to take pictures of babies in the NICU for free! Jennifer actually offered to do my maternity pictures for me as well. She was even going to fly to my house, so I didn't have to drive to her. What a sweetheart. Of course it rained, so all of her outside ideas were laid to rest and we shot in her studio. I'm still so happy with the opportunity to even get to do them. I normally do NOT like or have had any desire to do maternity pictures, but this is a different situation and I am grasping for any memory I can have of my little angel. If she proves all the dr's wrong and pulls through, then I have more than a memory. Jennifer is also coming to the hospital to take pics of AG and of the family as they have their first encounter with AG. As she says, "capturing the things that you will not be able to see because of your section". All I can say is there are angels on earth. My MIL and I went to babies-r-us to buy a present for someone (not me) and it was such a sad moment. As we walked into the store, my immediate attention went straight ahead to the preemie clothing section. First let down. I browsed the store only to end up in the "keepsakes department". Any other pregnancy, I would have passed it up, but I couldn't. I ended up buying keepsakes to capture her handprint and footprint. By the time I finished looking through all the momentos, I was sad. Once again, feeling defeated, we left. A song came on the radio that reminded me of my brother. I turned it up and explained the logic of comparison to my MIL. The song was my brother to a "T". Man I miss him. He's been gone for over a month, almost two and there is not a day that goes by that I don't think of him. He is the background on my phone, so he is never far from my mind. Although at this time, I am trying not to think of him. He always said, "Ava is going to be our miracle baby". That makes me smile. Oddly enough, my mamaw pointed out that "the Lord never takes anything away without giving us something in return". Her logic was, "when your grandfather died, shortly after Cody (my nephew) was born. After your daddy died, Landon was born. Now, after Doyle died, Ava Grace will be born. She will be just fine. She is going to make a miracle out of doubt." I love this wise woman and I hold what she says near and dear to my heart. I pray that she is right. A friend of mine, Linnea, posted a saying on my wall that basically says that "we will never be the same once we pass this storm". This is a scary and hopeful saying. I am scared that I will be a much sadder person if Ava's birth doesn't go as I pray it will. It is hopeful because "maybe I will be a stronger person as well". Maybe I will not take any little thing my kids do for granted anymore. Maybe I will be grateful for the little and big things and life and the honest people the Lord puts in it. I already have a greater respect for my husband. His strength is my strength. He never reads my blogs, so this is not me being sweet. :) I honestly love this man and I think that the whole experience has made us different people, but closer. Maybe this is another reason we are enduring the anticipation and uncertainty. I can't tell you guys how much I appreciate my family. They are extremely supportive. My sis in law is my right hand and has volunteered to do all the things that I don't know if I will be able to. Thank You!!! I love all of you (even the ones who don't read this haha). Right now, I am sitting here in awe, watching my baby girl move in my belly. This is the first time I am actually seeing her move across my abdomen. It is so fantastic!!!! I hope I can catch this on video so I can share it. Shirt on, of course. My little girl is such a fighter. Maybe if I play the Rocky theme song, she will start boxing. I would love it! I promise to send you all your bracelets as soon as I get them. According to the tracking, I should receive them tomorrow. I will deliver them asap. I would love for everyone to wear them on Monday when she is born and say a little prayer for her. The Lord hears all of our prayers and maybe, just maybe he will get bombarded with the prayers for this little angel and give us a miracle! Thank you, everyone!!!!

Less Than Two Weeks!

EEEEEEE........ (As my friend Sarah says)Such an exciting and scary time all together. We had our last dr's appointment yesterday. There really was no change made to the scheduled section. Miss Ava actually cooperated with the dr's yesterday and let them take all the pictures of her heart that they wanted. Made me wonder if she was mine there for a little bit. We met with the anesthesiologist to review my previous sections and discuss the possible causes of complications. We did not come up with any concrete reasons, I'm sad to say. Looks like we will be winging it again and praying for the best. Bryan and I also took a tour of the NICU. We were initially told that since we would not be intubating her that she would go to the regular newborn nursery. Well, as of yesterday, that did not seem to be correct. We were told that she would be taken to the NICU, since the nursery does not provide oxygen, IV therapy, feeding tubes, etc. if needed. So when we went through all the do's and don'ts of the NICU and stepped inside, instantly I lost my breath. This kind of upset me as I knew what to expect. I have worked in a smaller NICU before and I knew what complications I would be looking at. Ironically, the baby that we stood beside 80% of the time had just had surgery for spina bifida. How weird? This was a little different as this infant probably weighed 7 pounds and my little angel only weighs 3lbs. 2oz. She is growing slowly. I seriously doubt that she makes it to 4 pounds. I thought wow, is this a sign that we SHOULD do the surgery on her back? Then a friend of mine was telling me about a lady that wanted to talk with me regarding her son had SB surgery a little while back and now he is 4 months and super smart. "Is this another sign?" I thought. In case you don't know me that well, it is safe to say that I am a little superstitious and look for signs. Not crazy signs, just listening and looking for ways that the Lord may be talking to me. Anyway, as of right now, we are just waiting for her arrival to see about the surgery. Neither of us want her to be in a incubator for 3 weeks fighting to hang on when we can be holding and loving her if this is her only time on earth. Not to mention, that at 3 months she will need to be evaluated for heart surgery. Bless her little heart, she is such a trooper already. Right now we are going to focus on the here and now. We are scheduled at 6am June 18th for her arrival. We pray she arrives kicking and screaming (in a good way).In other news, let me tell you about all the positive things/events my little miracle has brought into my life recently. First of all, we (Ava and I) had a pamper party the other day. My awesome family and friends spoiled me. I received the awesome "FIGHT FOR AVA GRACE" bracelets, prayer bracelet, Ronaldo bracelets, Spa gift certificates, etc. A dear friend gave me a printed song with a knitted crown. I cried. All of these gifts were so fantastic and heart felt. Ava's little crown will be way to big for her tiny head, but hey, what princess wouldn't like a large crown? I try to stay optimistic and pray that she will grow into it one day. It is so hard at times. I never think that I should have gave up on her when I had the chance. She is my little angel and she will always be my little girl. I must admit that a couple of other people have touched me in such a deep way. A friend of mine has a husband that is in Afghanistan. He is scheduled to return soon for a short period and then back to fighting he goes. This is super bittersweet. Thank you for this by the way. Anyway, he wants to take a few bracelets to his troop in Afghanistan. Men wearing pink and fighting for our country and my little girl!!! Wow!? Now my miracle is being supported in another country. How wonderful and touching. This literally made me cry and believe it or not, I don't do that very often. My other friend saw a picture attached to my facebook page of a billboard with a picture of a little girl with Trisomy 18 that just turned 2. It said something to the effect of "Fight for Trisomy 13 & 18" and "Happy Birthday...". The little girl on the billboard touched a life of a marketing rep and they produced a billboard for her 2nd birthday. The friend of mine asked if she could sponser a billboard for Ava Grace. **Breathless**. She wants to put it in Jackson, where AG will be born. Wow, another person advocating for my miracle. These are some of the most touching gestures I have received yet. The irony is that before Ava Grace, I always saw the bad in the world and all the self absorbtion that it produced. Now, the Lord is opening my eyes to all the people that want to help and show their goodness and selflessness. Maybe this was the purpose or the reason the Lord chose me. See, once again, looking for a sign. For all of my fellow Trisomy moms, I absolutely must tell you about Icing Smiles. Lauren told me about this company that partners with local bakeries to produce a "dream cake" and other special occassion cakes for your terminally ill child or siblings. All for free! They normally don't take a case where the child is not born yet, but they took Ava! The Sweetery Bakery in Cleveland has partnered up with Icing Smiles to do Ava's dream cake. There work is phenomenal! An example is sweet Hayden's cake. It was truly a dream cake. My plan is, when AG comes home, to have them make the cake and have a "celebration of life" party. She will be the present! I am super excited. You can see their work on facebook. All I can say is wow.Please continue to pray for, not only Ava Grace, but her dad and her brothers. I do fear that they will take any bad outcome really bad. Landon already brags about his little sister, talks to her in my belly, sings to her and has truly never lost anyone this close to him. He and my brother had just started getting close when he passed away. I watched him at the funeral and it upset him a bit. I can't imagine what goes through a child's head in a situation like that/this. The neonatologist says that he is too little to go into the NICU to see her, so I am on needles praying for him to be able to see her (doing good of course). He tells me all the time, don't have her while I'm at my daddy's house. :) My sweet husband, well he is my rock and even though I think I could skip him across the water sometimes, I love him with all my heart. He has already been through so much by losing his sister at a young age, it breaks my spirit to think he would have to relive losing that kind of love again. Guarded optimism is my route of choice. I choose to be positive until I absolutely have to be negative. Thank you all for your love, support, and prayers for my family. We are truly blessed to have such supportive friends. We draw our strength off of your prayers and positivity. Please keep it up and we will keep lifting up our gift of each day to the Lord. He is the ultimate physician and He has the last call.

Ava Grace at 35 weeks

"Fight for Ava Grace" with Ava in the belly on one side and "Hope for Hayden" with Hayden (smiling) on the other side.

My sweet hostesses from my pamper party. Aren't they beautiful!?

Mr. Hayden at his 1st birthday with his "Sunshine" cake.

This has been my saying for the past few days. Adopted from a supporting friend.

See her sweet smile....

Ice cream cake from the girls at work :)

Another day with you!

My dear Ava Grace,

Today was a better day. It seems as the further I get away from our last appointment, the better I am. Today you have been a active little thing. Kicking me all day. I love it! You keep on communicating to me with your little feet. We go back to your next appointment at the end of the month, but not before we go a couple of times to take more pictures of you! :) I love that I get to go every week to see your sweet face on the screen. Mrs. Christy takes lots of pictures and measurements so we can watch you grow! You are so long, by the way. Tall like your dad and skinny, unlike your mommy. I am half way through my pregnancy and you are not even a pound yet you little buggar! Mommy is willing you to be fat. Not many mommies would wish this on their baby. I am not like other mommies though. You will find this out and beg for a "normal" mommy. I can't wait to see your sweet face this week on the screen! I love you. Sleep well baby girl.

Mommy

The date is set!

So, let's see where to start.......We have made a date for Ava Grace's c-section birthday of June 18th. Yay!!! Upon her BIRTHday, we have a lot of huge decisions to make. After talking to the team of physicians from UMC, we have been made aware that we will decide at that time whether or not to close the hole in her spine. This all depends on her short term prognosis upon delivery. It is possible that she may have to have a shunt placed from her brain to her abdominal cavity as well. This seems to have freaked a couple of people out because of them thinking this would be a visual shunt. The shunt is not visible to the eye. It is internal and unless we tell you, then nobody would ever know. I tell this addition, because I have been approached with misinterpreted statements (regarding this) from other people. If she has the open neural tube defect closed then she will be in the NICU for a minimum of 3 weeks. We will not be able to hold her during this time period. This absolutely breaks mine and Bryan's heart as we not promised tomorrow and we are scared to have the surgery in the chance that we can lose her while she is in there and not have had that time with our little earth angel. The next big decision that we have made is we dont not want her on a vent. Some babies with her diagnosis have problems remembering to breath and just stop. It's kind of like Sudden Infant Death Syndrome, except it is expected with her diagnosis. While many babies go on "life support", we have chose the option to not do this. Many babies never come off and a lot of them develop secondary infections, making the whole process and suffering harder on their little bodies. This does not include, the possible damage the tube can do to her airway. This was a very hard decision to make and I do not think that I could have came to peace with it without Jackie from the Palliative Care Team. They are true advocates and do not sway to the negative aspects of the situation, as many of the perinatologist have. Bryan says that they just don't sugar coat it for me. I don't believe that they have to do that for me, but try to be sensitive with your words. Don't say "your baby only has a 10% chance to make it", add "but we are going to evaluate her and hope for the best". Words can kill the soul and the hope of all. Now as far as her heart, the Pedi Cardiologist was fantastic. She is treating Ava Grace just as she would any other baby. She has told us that she will do a ECHO on her as soon as she is born to re-examine her heart and will do surgery to correct the VSD when she is 3 months. How fantastic!? Some dots of light shining through the walls of the tunnel. She also told us that her heart defect would not be what takes her out of this world. (That's the way I can handle hearing things) This is good news to me.Now, in saying all of this, here is what I really want everyone to know. Don't avoid asking me questions about Ava, please. She is my daughter regardless of the outcome. She will always be my first daughter and I love her through any of her "extra specialties". Talking about her is my therapy. I enjoy treating this pregnancy as normal as I can. She makes me smile and cry with joy when I see her on my ultrasounds. She kicks me, well technically punches me all the time, which is not "normal" per the dr's. T-18 babies usually do not move ofter, per dr's. Well this one does! She is a fighter, like her mom :). I will fight for her last breath. Don't avoid the rubbing of the belly, like a little budda doll. Normally, I don't care for this, but in this pregnacy Ava loves to be touched. If Ava loves it then so do I. Some great things that I have experienced recently was watching her on the ultrasound put her thumb and pointer finger up, pull her downward and act like she is shooting something. This cracked me up!!! She also has smiled so much. Makes me one happy momma. She was caught of camera practicing breathing. How awesome?! I am super excited to go back and see her sweet face again. This time, I am going to try and take Landon with me. He is so excited to be having a little sister. He knows the possiblities of the situation and is still excited. Maybe we all need to be more like a kid. Hopelessly optomistic and niave. I am preparing for the worst, but hoping for the best and until my angel shows me different, no WORDS can change that. Thank you all for your continuing support, love and prayers. They are very welcomed and needed! P.S. Thank you all for your prayers through the loss of my brother. I miss him everyday. He was a big encourager with Ava Grace, but at least I know if the Lord takes my baby girl sooner than I would like, then she has my dad and my brother there to help Jesus spoil her.

This is what I pray for!

My sweet mother in law gave me this for Mother's Day ;)

My sweet necklace with my beautiful kids names and birthstones

This is one of my wonderful brothers, Doyle. He is my heavenly brother that is always in my heart.

This is my oldest son, Landon. He continues to amaze me through his outpouring love.

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