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