Update from MFM appointment 12/26/11

Dear Avery,

       We just got back from the MFM doctor to check on your progress.  We saw Dr. Cook for the first time today and we really liked him.  He is very smart and seems to be well versed in all aspects of your condition.  He also knew how to make us giggle in a tense situation--that is always appreciated.

     We saw a couple of new things at this appointment, but everything that we had already seen stayed about the same.  Your bell shaped chest is still very pronounced and Dr. Cook seems to think that this will be a battle that you can not win.  Most of your symptoms point to Thanatophoric or death seeking Dysplasia.  This is not a survivable condition and we would inevitably lose you shortly after your birth.  Dr. Cook did say that most babies with this are born alive, so we pray for as much time with you as we can possibly get if this is in fact a true diagnosis.  Only time will tell.

     A couple new things that we noticed at this appointment were that you have Kyphosis in your spine.  This is similar to Scoliosis, but your spine curves front to back instead of side to side.  We also saw that your middle and ring fingers have a wide space in between them on each hand.  This is called trident hand and it is NOT characteristic of TD--there is still a little hope that it could be something less severe!  I also have an excess amount of amniotic fluid in my uterus. This leads the doctor to believe that you are not swallowing how you should which presents another concern for viability.

     Dr. Cook checked me for any symptoms of preterm labor and said that at this point things look great.  He doesn't think that there is much of a chance of me going into labor anytime before our next appointment on January 13th.  He thinks that it is very important for us to diagnose your condition regardless of your survival.  He said that this would have to be a postnatal diagnosis, but he wants for us to get in contact with some geneticists in California so that they can start following our case.  He strongly urged us to pursue genetic testing after your birth so that we can be prepared to help your future brothers and sisters should they have similar issues.

     You are still as beautiful as ever and I cherish every chance that we get to see your pretty face.  I know that God has a plan for your life and that you are here for a reason.  I wish we knew with more certainty what your future holds, but it is in God's hands and His hands only.  I am so glad that your Papa was able to see you today.  You are sooooo very loved sweet angel.

                                                                         Hugs and kisses,
                                                                                      Mom

                                                                    
                                             

     

Merry Christmas!!!

Dear Avery,
     I hope you had a wonderful first Christmas sweet princess!  You have been out of control kicking these past couple of days.  My first Kentucky Christmas was a lot of fun, but I am all worn out now.

        We went to midnight mass on Christmas Eve and you danced to the music the entire time.  Your daddy was FINALLY able to feel you that night in the middle of mass--it was awesome! We woke up early to do gifts the next morning and your daddy got me a sweet "A" for Avery necklace, a massager, and the washer and dryer that I have been drooling over for the past three years.  It does an entire load in 30 minutes--I am stoked!!! I got daddy and Ipad and a couple of other little things so he has had a lot of fun playing with that. 

     After we did presents, we went over to Yay-yay and G-daddy's for breakfast with all of the Luckett side and then presents with the immediate family once everyone left.  After we did presents, Yay-yay and I sat on the couch with her hand on my belly just waiting for you to kick.  You did!!  So now both of your grandmas and your daddy have been able to feel you (your 2nd cousin Katie felt you last night at Grandma and Pops' too!) 

     Overall, it was a great Christmas.  Staying so busy took my mind off  of the fact that we have another MFM appointment today at 1:00.  I usually get really nervous before them, but I have been strangely calm for this one. I have a good feeling about today.  Your Mimi and Papa got in town yesterday afternoon and this will be Papa's first time seeing you.  He is really excited to meet his first granddaughter!
                                                                             I love you,
                                                                                        Mom

Now I Lay Me Down to Sleep

Dear Avery,
   
     I contacted Now I Lay Me Down to Sleep today.  I have been struggling with whether or not to call for a little while now, but finally decided to bite the bullet and do it.  I promise that I am not giving up on you baby girl.  I just want to be prepared for anything and make sure that we capture every moment of your life that we possibly can.
    
     I spoke with a really nice lady named Rhonda first.  She is the parent coordinator for this area.  She lost her precious son 4 years ago.  We talked for a little while and she told me that Dr. Weeks was her MFM doctor too.  She put me in touch with another nice lady named Courtney, and I just spoke with her on the phone.  Courtney is going to call me back after Christmas and set up a maternity photo shoot for sometime in the next couple of weeks.  I am really excited to have more pictures of you in my belly!  Courtney will also come to the hospital when I go into labor to take pictures of you right after you are born.

     I had never heard of this organization until a couple of months ago.  I was probably 3 and a half or 4 months along and the local news did a special on a family that was carrying their little girl to term even though she wasn't expected to make it.  NILMDTS helped them through their grief by taking beautiful photographs that they could cherish forever.  I never imagined at that moment that this could ever possibly be my own story.  I sat there and cried silent tears for that family with one hand on my belly holding onto you as I listened to their story.  Now it is very apparent that God showed me that program for a reason.  He was preparing me for what the future would hold.

                                                                                             I love you sweet angel,
                                                                                                                      Mom

Flying home

Dear Avery,

      I am typing this to you as I sit on a plane flying from your Mimi and Papa's house back to our home in Louisville.  You have been kicking nonstop since we got in the air and it feels like you have been rolling around a lot too.   Your kicks are getting stronger and stronger and you even kicked Mimi in the hand TWICE!!!  I'm hoping that you will cooperate enough for Daddy to feel you really soon. (You love to stop kicking right when someone is trying to feel for you.)

     It was great to be back home for a little while and it is strange not knowing when I will be able to go again. I tried to make the most of my time there and see as many people as possible, but there are so many things that I just didn't get around to.   We had the annual Garage Sale Christmas Party on Sunday after I got in town.  Mimi and Papa only put up their fake tree in the house this year, so we drove around to pick out a Charlie Brown tree for the pool room.  It turned out to be really cute and we were able to have a real tree for the party! I ended up with a frog shaped humidifier (which I really needed to help combat all of the pregnancy nosebleeds that I get.) None of the gifts were too crazy this year, but there were some funny ones in the mix.

      Your Mimi and I went shopping on Monday to find you some special outfits to have at the hospital. We got you a pretty pink night gown and a matching cap from Hugs and Hissyfits and a beautiful white dress from Build a Bear (it will be just your size!). We also got an adorable white headband with a big pink flower on it for you to wear with your dress.  We went over to Granny and Papa's that night and she made us an awesome dinner-ribs and rice, collards, mustards, cracklin bread, sweet potatoes, and BBQ ribs (you didn't have much room to move when we were finished eating!).

      It was so great to see so many of our friends and family members these past couple of days. Everyone wants to know how you are doing and they all continue to offer their love and support. Your cousin Wyatt surprised me by finally learning my name!!  He calls me Aunt Re-re :). Wyatt, Momo, and I took a sweet snuggly nap together today.  I had to sneak out while he was still sleeping to catch my flight. He talks about "baby" all the time since your Uncle Chris and Aunt Lindsay have been telling him all about his cousin Avery. I know he already loves you!

        I am about 23 and a half weeks pregnant now and my belly is getting bigger and bigger everyday.  I haven't had a ton of contractions lately, so hopefully those will be going away altogether. I want to keep you in my belly as long as I possibly can!
               
                                                       I love you so much,
                                                                        Mom

Charlie Brown Tree

21 week belly

22 week belly

23 week belly

Build a Bear dress and pink flower headband

All of your new clothes

                                                                                

You are magnificent!

Dear Avery,
  
  One of my good friends from work randomly texted me today with this:

I like finding out the meaning of names.  Did you know that both Avery and Alis mean "noble"? :)  I thought that was cool.  My favorite song to sing to my babies was Edelweiss and Edel means noble.  Maybe Avery would like to hear that song too. Noble means magnificent. I hope you're doing well today.

I played Edelweiss for you right after she told me that and you kicked like crazy!  (Either you really loved it or you wanted me to turn it off--I'm going with the thought that you loved it.) I hope you're cozy in there!

                                                                            I love you tons,
                                                                                            Mom

Rough week is getting better

Dear Avery,

     This was a rough week because I didn't have your daddy here with me.  Luckily, your sweet dog Tucker and plenty of our friends were there to keep us company. 

      Yesterday was a good day with no tears and lots of laughter.  It was the last day before Christmas break and my students were really excited.  We only worked a half day and I had my work Christmas party at Dundee right when we got out.   We had a great time and I ended up staying until about 5:30 with Kristina and Ann, long after everyone else had left. 

     I got home right before your dad pulled up and it was really great to have him back.  We went to eat dinner at California Pizza Kitchen with the Spies and the Zinsers shortly after he got in and then did a little shopping since we were already at the mall.  We almost have all of our Christmas shopping done, but we still have to get something for your cousin Jackson. 

     I can already tell that today is going to be a good day too because it started out with lots of kicks from you!  I was able to feel two big ones this morning with my hand and I have been feeling tons of little ones ever since.  I love to know that you are in there-keep it up little girl!

     Tomorrow morning I will be flying back to Florida for a couple of days.  This will probably be my last trip home for a long time because Dr. Link acted like traveling these days is not the best idea.  He was happy that I was flying instead of driving, so I think we should do just fine.  I am really excited to see everyone and I can't wait for our family's Garage Sale Christmas party tomorrow night. 
  
                                                                     Xoxoxo,
                                                                              Mom

Letter from a student

Dear Avery,
     This is a letter that I got from one of my second graders today:

Dear Mrs. Ogburn,
     Congrats with your baby!  My cousins name is Avery!  I really like the name!  How did you come up with the name?  You're the best second grade teacher ever!  I think that Avery will turn out to be really healthy and pretty and strong!  I hope you have a great Christmas and a happy new year!  Can you show us a picture of Avery when she is a baby?  I love having you as a second grade teacher!  I can not wait to see a picture of Avery!  Are you going some place for Christmas break?

It made me cry.  I hope so very badly that she is right. We pray for you in class every morning baby girl and they don't even know why.  I want for them to be able to meet you one day-it might kill me if I have to tell them that you didn't make it.
                                                              Please stay strong princess, 
                                                                                                   Mom

You're gonna have all of me

Dear Avery,
    
     Your Auntie E just shared this beautiful song with me and it says exactly how I feel about you.

Afraid to love
Something that could break
Could I move on
If you were torn away?
And I'm so close to what I can't control
I can't give you half my heart
And pray He makes you whole

(Chorus)
You're gonna have all of me
You're gonna have all of me
'Cause you're worth every falling tear
You're worth facing any fear
You're gonna know all my love
Even if it's not enough
Enough to mend our broken hearts
But giving you all of me is where I'll start

I won't let sadness steal you from my arms
I won't let pain keep you from my heart
I'll trade the fear of all that I could lose
For every moment I share with you

Chorus

Heaven brought you to this moment, it's too wonderful to speak
You're worth all of me, you're worth all of me
So let me recklessly love you, even if I bleed
You're worth all of me, you're worth all of me

click here to listen

You're gonna have all of me,

          Mom

Thoughts for the day

Dear Avery,
     
     Today was a little rough, but feeling you in my belly made it all better.  Your dad left on a business trip to NYC this morning and I already miss him a lot.  I don't like that he had to go, but I keep reminding myself that it is only for a couple of days.  Friday couldn't come soon enough!

     I had an appointment with Dr. Link, my normal OB, after work today.  We listened for your heartbeat and talked about everything that we have found out about you so far.  Dr. Link shared with me that his youngest son was not thought to be compatible with life, so he understood all that we were dealing with at the moment.  He offered to speak with anyone who might be pressuring us to terminate the pregnancy to help them understand why we are choosing to carry you to term.  Fortunately, this is not an issue that we have at all.  Everyone close to us wants to give you every chance possible so that they can meet you too.  I will never regret giving you a chance baby girl--no matter what happens.

     Dr. Link confirmed that my physical health was exactly where it should be at this point.  He was happy with my weight and blood pressure and doesn't think I should have any prenatal issues with regard to my physical health.  He assured me that all of my crazy emotions are normal and that it is okay to weep for you.  He asked if your dad and I had been talking to anyone about your struggles.  I told him that we have a wonderful support system of family and friends who have been great from day one.  He suggested a support group at the hospital that he thought we might benefit from.  I told him that we were open to it, so he is going to contact them on our behalf. I think it will be nice to meet other people who have walked in our shoes and can really relate to this journey we are on.

     I have been overwhelmed by the love and generosity we have been shown by those around us.  We have been blessed with countless cards, emails, texts, hugs, kisses, pats on the back, reassuring smiles--you name it--we have been shown so much compassion.  I received a beautiful card and generous gift this morning from a coworker who is fighting his own battle at the moment. His son was diagnosed with Leukemia two months ago and has been undergoing vigorous treatment ever since.  His beautiful note was so touching that it moved me to tears.  It is amazing how much someones words can warm your heart.

     I am scared that people will worry about how they should act around us.  So many of our friends are expecting little miracles of their own (one little bundle of joy, Alex, came last night) and we are so ridiculously happy for them.  I don't ever want people to tiptoe around the joy that they have for their children because they are worried about upsetting us.  It will be extremely hard if you are not able to make it, but what a blessing it will be to always have these children of the same age to help us remember you.  In some ways, you would be able to live on through your friends.  You will always be my baby, whether on earth or in heaven, and I could never hide the love that I have for you.  I would never expect anybody else to do the same. 

     I found a wonderful website today called My Very Own Angel.  It is specifically for parents who choose to carry to term despite a poor or potentially fatal diagnosis.  It is nice to know that there are other people out there who understand what we are going through.   The link is: http://myveryownangel.org/index.php.  MVOA gives advice on all sorts of things that I may not have thought about on my own.  It also offers advice for people so that they know how to act around us.  I don't agree with all of it, (I hope that people continue to pray for a miracle and I don't associate flowers with death) but overall they have some wonderful advice.

                                                            You will always be my angel,
                                                                                                  Mom

Your Baby Blanket!

Dear Avery,

    Mimi and I just finished your blanket!!!  Here are some progress pictures:

And here is the finished product!

                                                                               I hope you love it as much as I do,

                                                                                                          Mom

A Day With Mimi

Dear Avery,
    
     I didn't go to work today because I wanted to stay home and spend time with your Mimi.  We had a long, emotional, and wonderful day.  We shared tears and hugs and laughter-then some more tears. 

     We decided that we wanted to make our special apricot Christmas cookies, so we got up this morning and cooked the preserves for the filling.  We made the dough and put it in the fridge to chill, then we set out for a day on the town.  We went to The Cheddar Box for lunch.  I ended up getting upset and had to go out to the car to calm down while Mimi paid.  It feels good to talk about you, but I still have a hard time holding it together when I think about the fight that you are facing.

     Your Mimi wants for you to have a beautiful baby blanket, so we set out on a mission to find one after lunch.  Nothing that we found seemed special enough for you.  A purchased blanket just didn't seem personal enough to wrap up an angel like you, so we decided to make one.  We spent what felt like hours in Jo-Ann fabrics and finally decided on the perfect materials. 

     It will be dainty and pink with a soft furry side, a satiny side, and a pretty pink ruffle all the way around.  It is embroidered with your name-Avery Alis.  God led us to the right embroidery place.  After calling every possible place in Louisville, we showed up at Spin-Broidery in Plainview for one last shot.  The man told us that he could do it in 30 or 40 minutes and your Mimi started crying from happiness.  We explained why it was so special to us to get it made, and he prayed a beautiful prayer for your health.  It was meant to be that we met this man today.  God is on our side baby girl-we still have hope.
                                                                         
                                                                      You are loved by many,
                                                                                                Mom

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,
                                                                                         Mom

Nervous...

Dear Avery,

       Tomorrow is the next time that we get to see your beautiful face, and I could not be more terrified.  I have been on the verge of a panic attack all day long and finally had a meltdown once I got home.  I am so scared of the answers that we may or may not get tomorrow morning.  I want to know everything, but I also want to go on believing that you are going to make it.  I keep telling myself that this is all a dream and we are going to be miraculously healed, but I know that is not realistic. 

        I am hoping and praying with all of my might that your chest is growing and that you do not have the thanatophoric type of dysplasia. I don't care if you are different or special by society's standards, I just want the opportunity to be your mom.  You are perfect just the way you are, now we just need your body to cooperate.  I love you so much baby girl and I need you to survive--I need you in my life.  I want so badly to decorate your nursery and fill it with all sorts of girly goodness.  I want to celebrate your growth and not worry about your lungs developing in the coming weeks.  I want to know that I get to have you here on earth and it is killing me that no one can tell me if that will happen.

      Your daddy is picking Mimi up at the airport right now.  I am so glad that she is going to be here with us in the morning.  I want her to be able to see you and know you like we already do.  Your Yay-yay and G-daddy are coming to see you too.  There are so many people who love you Avery.

                                                                   See you in the morning,
                                                                                         Mom

Good Fortune

Dear Avery,

    It has been a couple of days since I have written to you.  Overall, it has been a good weekend spent with family and friends.  You are moving like crazy and and your heartbeat has been strong every day.  I'm still feeling very hopeful and fortunate to have you with me right now.  I had a rough moment this morning in church.  I heard a baby crying in the back and I couldn't help but think that I might never get to hear you cry like that.  I teared up for a little while, but I quickly recovered. I have to keep reminding myself that today you are healthy.  Today you are full of life, and today you are with me.  I can't dwell on the unknown aspects of the future or I will miss out on the time that I am blessed with right now.  Sometimes that's easier said than done, but I am trying my hardest to stay positive.
   
     Your dad and I went and picked out a Christmas tree this morning.  I love the smell of a real Christmas tree in the house!  I put the tree skirt around it and wrapped all of the presents that I already have so it would look official.  We still need to add lights and ornaments for it to be complete, but it already looks awesome. I cleaned and did some laundry today to get prepared for the coming week. Your dad worked in the basement with Uncle Pat and Uncle Doug.  They are done with all that they can do, so we are ready to call in the dry wall guy.  The end is in sight for a cozy basement where you can play!  Have I mentioned that I am sooooo excited for your Mimi to get here on Wednesday?  I love when she is able to come visit. 
    Tonight, Daddy and I went to PF Changs for dinner.  It was very yummy as always (especially the flourless chocolate torte--you're welcome for that!)  My fortune was so fitting for all that we have been dealing with lately.  "You will soon emerge victorious from the maze you've been traveling in."  I believe that we will.  Hopefully, that was a sign from God that you are going to be alright.  Keep on fighting little girl and remember that you are loved by many.
                                                                   Hugs and kisses,
                                                                                     Mom

Dear Avery,
Today was a good day. I laughed and smiled more than I have in awhile. It was my DL day at school so I was able to go on a date with your dad for lunch. We met each other at O'Charleys and it was delicious. I have been nervous about sleeping away from him for awhile, but it's not so bad. The beds are really cozy at my hotel, so I know we are going to sleep just fine.
The KYA conference that I took my YMCA Club kids to has been a lot of fun so far. Four of our girls prepared a bill on mandatory drug testing for welfare recipients and they blew the competition out of the water! I am so proud of how well they did in their presentation. They were chosen as one of the top bills out of the whole conference, so they will present and debate their bill in the actual house chamber tomorrow when we go to Frankfort. I'm going to try and get some shuteye now so I will talk to you later!
Goodnight xoxo,
Mom