I’d like to update everyone with some news about our baby. Alaina and baby are doing ok, but there is a reason for this long post.
Her name is Ayla. We’ll be asking you to pray for her specifically so we would like you to know her name. Ayla, like Mikayla or Kayla.
Some Background Info:
A few months ago we were told by Alaina’s O.B. (Doctor Moore) that Ayla has a Single Umbilical Artery (SUA). By itself the SUA isn’t much of a concern. Unfortunately, Ayla also has a missing kidney. Dr. Moore explained that people are often born with just one kidney and that Ayla will live a full and normal life. Dr. Moore explained that with special circumstances like these we would need to see a specialist for a more thorough examination. The appointment was set for a couple weeks later with the Maternal Fetal Medicine (MFM) department at the SIU School of Medicine at St. Johns Hospital (here in Springfield).
We were nervous as we arrived, but we thought we knew what to expect. We thought they would simply confirm the missing kidney, reassure us that it was “no big deal” and send us on our way. We checked in and sat in the waiting room with the rest of the obviously concerned women and mothers-to-be. I was concerned for each of them and sure that our issue would be less complicated than theirs.
A woman opened the “Patients Only” door and called Alaina’s name. We followed as she led us into a room just down the hall. It was a poorly decorated neutral color room the size of a small bathroom. The room was full of chairs surrounding a table that had a Kleenex box in the middle. It was the Kleenex box that gave us pause, we knew why it was there and hoped we wouldn’t need it. We were told to wait there for the Genetic Counselor.
A very sweet young woman came in and questioned us about every possible family member, searching for a genetic marker that might explain the SUA and missing kidney. She told us that everything looked great genetically, no issues, no cause for concern. She explained some of the testing options and how they worked, the accuracy of these tests, etc. She recapped and said something like “I see you’re here to confirm the missing kidney and to look for the stomach.” Alaina and I quickly asked “Look for the stomach?”. The Genetic Counselor explained that Dr. Moore’s office couldn’t see Ayla’s stomach and MFM was instructed to look for it. I clenched Alaina’s hand and she clenched mine; this was the first we had heard about a missing stomach.
Our Genetic Counseling meeting complete, we were taken by a nurse to the exam room. An Ultrasound Tech came in, started her scan and quickly found Ayla’s stomach. The Tech explained that the stomach can be hard to find because it doesn’t always have anything in it. If it was empty when we were at Dr. Moore’s office they couldn’t have found it. By the end of an hour long ultrasound session Alaina’s belly had been searched and searched and searched again. The Tech pointed out the missing Kidney, but nothing else was mentioned and it looked like things were going to go just the way we had anticipated.
Then the Doctor (Specialist #1) came in, introduced herself and did a little search of her own. She completed her exam and started to talk with us about the “things they see”. Specialist #1 said, “There are four things we’re looking at.” She mentioned the stomach (found), the missing kidney (confirmed) and the SUA (confirmed). Then she told us that our baby “might” have something called Micrognathia (a small jaw/chin). She wasn’t sure as it didn’t look severe, but it was “borderline”. She tried to explain it, but Alaina and I got lost, and scared as she referenced dozens of conditions and syndromes that could be associated with it. Specialist #1 mentioned just enough to send my anxiety skyrocketing as I thought the worst. She tried to backtrack by telling us that she didn’t really see any signs of major syndromes or any of the fatal conditions that she had already mentioned.
I was completely wrecked when we left the hospital. Alaina was a little less worried, she wasn’t as concerned with the “borderline” Micrognathia and what it might represent.
A couple of uncomfortable and anxious weeks pass and it was time for another appointment. Specialist #1 wanted to see us again because of the possible Micrognathia and to check Alaina’s amniotic fluid levels. This appointment would also require a thorough examination of Ayla’s heart. The appointment was even longer than the first; three hours of stressful and exhausting exams. Specialist #1 came in and said that she was still unsure about the Micrognathia, it’s still there, but it’s still borderline. She talked with her colleagues and they felt the same way. Everyone agreed that sometimes it looks like Ayla might have Micrognathia, and sometimes it looks like she might just have a slightly small chin/jaw area (not uncommon in newborns). Specialist #1 then told us that they couldn’t see the stomach this time. She explained that the small chin/jaw might be a sign of a blockage or missing connection between Ayla’s trach-esophagus and stomach. She also informed us that Alaina’s fluids were “a little higher than normal, acceptable, but a little high.” Specialist #1 wanted us to come back again in two weeks to look for the stomach, review the possible Micrognathia, and monitor Alaina’s fluid levels. She did leave us with a little good news. She said that Ayla’s heart and head look great. This was good to hear, but didn’t exactly make us feel any better.
Two more weeks and once again it’s appointment time. This time we’ll meet with Dr. Thompson. We were happy about this because we hadn’t meshed well with Specialist #1. We didn’t tell her that, and I’m sure she’s a brilliant doctor, but sometimes people just don’t match up, no big deal. The Tech came in and started looking at Ayla. Some time had passed and she still couldn’t see Ayla’s stomach. They know it’s there, because they’ve seen it before, but it’s not filling up regularly and that means Ayla isn’t swallowing amniotic fluid. The Tech spent 5 or 10 minutes looking at Ayla’s spine, which was disconcerting, inspecting every detail. I sat there quietly thinking that this would be the next bit of bad news. Thankfully, it wasn’t, her spine looks normal. Whew!
Ayla gave us some very clear waves with one hand then the other. We’d seen her hands before, they were open and active, and always drew a positive reaction from the doctors. We had seen her little fingers waving about, touching her feet, touching her nose… pretty cute stuff really. Then, in one moment, our feelings changed. The Tech and I noticed at about the same moment that her left hand has only four digits. The Tech backed up a few frames, then forward a few, back, forward. She changed angles and even rendered a quick 3D image. She looked and looked to confirm it, sure enough, only four. Nothing more was said until the Tech finished and left the room. The door shut and I quickly scooted closer to the bed Alaina was laying on. We were sad and scared and sure that this was going to be indicative of some terrible news.
We wanted to have one, ONE, pleasant appointment where we could look at Ayla without leaving even more concerned than when we arrived. We weren’t going to get that today.
Dr. Thompson came in and introduced herself. She sat next to Alaina’s bed and in a very sweet, soft, voice she apologized for the way these appointments seem to always bare bad news. The kindness in her voice brought Alaina and I both to tears.
Dr. Thompson began to explain. “It appears that Ayla has something called VACTERL Association.” Dr. Thompson explained that VACTERL is a non-random association of birth defects. A baby is classified as VACTERL if they have 3 or more of the associated birth defects. Ayla qualifies as VACTERL in the T E R and L categories. VACTERL is an acronym for Vertebral, Anal, Cardiac, Tracheo-Esophageal, Renal, Limb.
Some of my research found references to VACTERL having an S on the end representing the Single umbilical artery.
What does this mean?
Ayla will need surgery almost immediately upon her arrival. Although it hasn’t yet been 100% confirmed, it is likely that her Tracheo-Esophageal fistula will need to be corrected.
Ayla will be born with some degree of Micrognathia. It’s too difficult to gauge the level of severity at this point, but she will have a smaller than normal chin/jaw and may need surgery to extend her chin/jaw so that she can eat properly. We do not know how soon this type of surgery might happen, if at all.
Ayla will be born with only 4 digits on her left hand. While I certainly understand that this could be cosmetically challenging for her later, it shouldn’t pose a threat to her overall quality of life. Look at the back of your hand with all of your fingers extended. Now hide your thumb or pinky finger. We aren’t sure yet which is missing, but this is basically what her tiny hand looks like right now.
Ayla will be “normal”. She will have a normal level of intelligence, normal body, normal legs and feet, a normal right hand and an almost normal left. Dr. Thompson mentioned that they don’t expect any more surprises in Ayla’s anatomy. We certainly hope and pray for that to be true. From the research I’ve done and from the info Dr. Thompson has given, most people survive VACTERL and live normal and productive lives. We’re thankful for that. If things stay the way they are, Ayla, after surgery, will grow up to be a beautiful little girl with only one kidney and a missing digit on her left hand.
We are
Scared. Worried. A little sad at times. We’re worried about the things Ayla will have to go through in the first minutes of her life. I’m worried about her and Alaina. Both of my girls will be in fragile states and that's really, really, scary. Our emotions are changing every day. We feel guilty at times, like we somehow caused this, like this is a part of us that we’ve passed to her. Thankfully, all three doctors have assured us that this wasn’t caused by something we did or didn’t do, it wasn’t caused by our age or lifestyle, it wasn’t something Alaina ate or drank, it wasn’t from medications or in the water.
Alaina and I know that things could be much worse. In our new-found perspective we feel deeply for those in situations similar to ours.
What happens next?
We don’t know how everything is going to go yet. It looks like we’ll be delivering in St.Louis, probably at Children’s. I’m confident in their abilities and we’ve already made one connection there through a nurse that Alaina works with. We’ve heard good things about their experience in treating babies with VACTERL. We have friends and family in the area and St.Louis is a relatively short drive. We aren’t sure yet if Alaina will have a caesarean. We know they will want a safe, controlled and scheduled birth, c-section or otherwise. We’ll know more after we meet with the Doctors in St.Louis.
There is nothing we can do right now. We know that God gifted her to us and that God has purpose. Ayla, if you’re reading this years from now… We can’t wait to hold you and hug you and kiss you. We want you, we love you, and we’ll do everything we possibly can for you. God made you EXACTLY the way you are and loves you even more than we ever can.
Please Pray
Pray that our Doctors have seen everything and that we won’t be hit with any more surprises. Please pray that Ayla arrives safely, that her doctors are awesome and can fix her up ASAP. Pray that Ayla recovers smoothly and that we get to bring her home shortly after. Pray that Alaina makes it through everything safely and that she isn’t overwhelmed with worry. Pray that I can be prepared, patient, and that I can put anxiety aside.
Thank you so much to everyone who reads this and thinks about Ayla or thinks about us, we appreciate it so much.
- Corey & Alaina
Your blog is clear, thoughtful, and loaded with all the information those who love the three of you need. We have been wondering about recent trips to the doctor but felt that your experience is so personal that we would wait to hear from you when you were ready. Know that you have been - and continue to be - in our prayers. Your little girl Ayla is a gift to you, just as you are a gift to her.
We love all 3 of you very much!
Dear Alaina and Cory, I am so gratful that you shared all this information regarding your beautiful baby. Neil and I will keep you all close to our hearts. We will pray for all of you. God bless
Corey and Alaina, I too feel scared, worried and a little sad as I read of your journey. But you certainly have my prayers. I’m along for this ride with you both. If I can help in any way, don’t hesitate to ask. In the meantime, I have great faith that God will do something wonderful through all of this. Ayla is a beautiful name and I can’t wait to meet the equally beautiful girl to arrive soon enough.
Alaina and Corey... I don’t know Corey but I know you and I know that you will love to death whatever God gives you. God bless you all and am looking forward to the birth of your baby girl!!
Corey… I know that God gave this precious girl to just the right people! Stay strong and allow Him to do the work. Daughters are such a blessing… I should know!
Wow! I can’t imagine what you two are going through right now-this brings tears to my eyes. I do know 1 thing for sure Baby Ayla has the 2 best parents coming into this world and she will be just fine. My prayers go out to all 3 of you. God Bless you.
Thank you for the update. You are in our prayers. God will work through this all to His glory.
Just wanted you to know will being keeping you all in our prayers…......specially Ayla and that Marion’s mom was born with only one kidney and has had a great life!
I want you to know we love all Three of you! We give you our promise that we will pray each day for all of you and on the requests mentioned above! Your sweet baby Ayla is going to have the Best Parents she could ever ask for! God knows your hearts and know every need sweet Ayla needs so he will bless you with this Amazing little girl to fill you both with so much happiest and love! Not everyone is given a heart to love but the Lord knows yours and those Grandmas and Grandpas! She will be the luckiest little girl! This is advise I have personally given myself thousands of times…the Lord has this! Ayla will grow up in a home that worships, loves, serves but especially Trust Him! He has this, so please know we are here for you! Can’t wait to see you! Love you, Carla and JR
Stella Kinney once told me that smooth seas do not make skillful sailors. I have never forgotten that and shared it many times. I know that the rough seas you are on will be smooth someday. They may not be glassy calm but they will be much, much better. You would think I would have some deep Biblical truth to share but since it is from Stella, I think it is pretty close! Love to all three of you. God is planning great things!
Baby Ayla, If you are reading this, you will probably know me by now as your favorite aunt. However, you are such a sweet and wonderful blessing. I’m praising God that we had the time to prepare the best care for you. Since I have known your parents for a really long time, I can honestly tell you that God knew just the right two people to be your Dad and Mom. Sometimes life isn’t exactly what we planned, but it is always what God had planned. I’m so excited to meet you, hold you, and teach you how to make fart sounds in your armpit. It might be scary at first but I promise you have an overwhelming group of people that can’t wait to love on you. Can’t wait to be your Aunt-Katie
Praying for you all! Children’s is a great hospital and I truly believe that the doctor’s there are used by God in mighty, MIGHTY ways!
Corey and Alaina, I am sitting here in TEARS, having just read this post. I am SO very touched at your strength and faith at this time, and ESPECIALLY your note to Ayla! KNOW that you are in my thoughts and I will be MUCH in prayer for you during this time. I pray that you will feel God’s hands carrying you and that He will give you a PEACE about this that ONLY He can Provide! I Love you guys like my own Children! Feel my HUG! XOXOXOX!
You will all be in our prayers. Not to be mean anything at all because we always wish for the best for our babies, but know that she is God’s little girl and He has made her in His perfect will. I have an alarm that goes off each morning at 8:44 to pray for three different friends. I will add your family (and Jim and Terri also) to this prayer time. I know that Alya will be a great blessing to your whole family.
Baby Ayla, you have the best parents God could give you and you are such a blessing to us all. God is making you perfect in His sight and make no mistake, He has great plans for you and your wonderful family. Can’t wait to hold you and feel you pull my beard.
Will pray MUCH for all of you. It is scary but we know God is sovereign and loves all of you so very, very much. Love, Carol Lobley
Wow! What a blessed little girl Ayla is already! God knew you both would be perfect parents to this beautiful baby girl. I know you have a scary, hard road ahead… But trust God and pray with each other and you can not go wrong. Children’s is amazing! I worked there after nursing school and like I said- my sister will make sure baby Ayla gets the best of the best during her stay there. You are all 3 in my every prayer. p.s - That was beautifully written Corey!
Corey and Alaina, What wonderful and thoughtful parents you already are to this blessed baby girl! Ayla will be so loved and cared for by you, her family and friends, and most importantly, by God. We will be praying her through every moment of her upcoming surgery or surgeries, and lifting up her parents in prayer as well. Thank you for sharing your story. You will be in our thoughts.
I will be praying for all three of you. Your faith and strength are inspiring. Ayla will have amazing parents! Btw, I love the name Ayla. I’m sure she will be as beautiful as her mama! When is she due?
Thank you so much for sharing all of this with us and for sharing Ayla’s beautiful. name. I will be praying for all of you.
Thank you for the update. All three of you are in my prayers. Corey, your little girl is blessed to have you and Alaina for her parents.
We have already started praying for Alya. She is a lucky little girl to have such loving parents and grandparents. We will continue to pray for the best possible outcome for her problems. We will pray for the doctors and nurses that have Alaina and Alya in their care. We pray for strength for all of you, and may you feel God’s love and presence throughout this difficult time. In God’s Love, Dianne and Ron Buch
Thanks to everyone for these kind and supportive comments. We truly appreciate every single one.
Corey, we hated to read of all you & Alaina are going through. Call on I Peter 5:7. God can manage this. In the meantime we’ll be praying. When is Ayla due?
Hi Alaina and Corey. I just read your post. Ayla will be in my prayers. What a beautiful name you have chosen for her.
I am crying as I type this. Please know that you are all in our thoughts and prayers. Ayla is so blessed to have you two as parents and you to be blessed with her. Please let us know what we can do to help, anything. We have space at our house, transportation, whatever we can do. I just read this blog and already love that little girl to pieces!! Love to you all and lots of hugs your way.
All three of you are in my prayers. Ayla is in awesome hands at Childrens!
Our heart goes out to you “kids” and prayers for all to continue to mature and go as blessed as possible. Your letter is so well written Cory. God bless you and keep you strong. We know it is very tough to have a ill child no matter what the age. This makes me very sad and tears to my eyes. Childrens is wonderful!!. You know we’ve been there. Now 9 years ago as Steph is now 16…and driving. Wasn’t you just 16?... We send love to you. I do understand this is a very stressful time. Advice… eat well, exercise, pray hard ..together, and hold your girls tight and often. Will look for updates.
Due date may change, but for now it’s May 14th. Somehow I missed that in the post.
Corey & Alaina - My mom passed your blog on to me. My heart goes out to you. Josh and I have spent many hours in the maternal fetal doctors offices in Peoria. What Mrs. Bollen said is so true. Life is a big journey with many ups and down. You will feel like you are on the nicest cruise ship and just thrown off with no life boats or vests. Luckily, in the end you will get the greatest gift their is in life. Ayla Joy is so blessed already and she will bring you many, many blessing! Your family will be in our prayers.
I am praying for you, your daughter, and your families. God Bless you! p.s. I’m not sure if you remember me or not. I work with Vicki and my husband Jeff and I attended your wedding.
Dearest Corey, Alaina and Baby Ayla, Ayla Joy, such a beautiful name for a beautiful baby girl and God’s Blessing to Alaina and Corey. Please know all of you remain in my prayers and the prayers of your heart are answered. OUR GOD is a BIG GOD so I’m asking that He heal Ayla so no surgeries are required. Also, Ayla will be a happy, healthy little girl who will be a testimony to Our Father’s miracles and blessings. Love & Belief, Cheri
Your story has truly touched my heart. I will include you in my daily prayers. Although I do not know you personally, I know that God does! He is with you, Alaina and your beautifully Ayla. She truly is a lovely, special baby girl.
Baby Ayla: God has given you two very special parents that love Him with all of their hearts and are preparing their lives for your entry. They love you and will comfort you like no one else every will. You are very special to them and will be loved by many many people. You have been prayed for by many and will continue to be prayed for by many. You have a loving heavenly Father as well that will protect you and Mommy and Daddy so put your worries aside right now and continue growing big and strong so you can come into this world with all of the glory you are intended to have. Alaina and Corey - you are two special and awesome people. Please know that you are in our prayers and that God will comfort you and protect you and your precious baby girl. If you need anything at all please let us know.
Thinking of you, praying with you, and listening to you.
My son had heart surgery on day one of his birth (immediate post birth surgery) at St. Louis Children’s: I can assure you that they are the best there is when it comes to family and patient care. If I can be of encouragement please do not hesitate to call or email. You and Alaina and your beautiful baby girl are on the forefront of my mind as I pray tonight. Godspeed and in the love of Christ
Will be praying for Ayla and the family !!!
My prayers are with you. God is in control as you know. My understanding what you are going through may be closer than others. When our son, Evan was three years old the doctors informed us he had neurofibromatosis, a cancerous tumor in his shoulder/neck area. In the Chicago Memorial Children’s Hospital they removed the tumor which left his right arm and shoulder to where he couldn’t make it work. After several months of checking to make sure there were no other tumors they did another surgery to graft nerves from his legs to his shoulder, which left him with about 80% usage. He does everything that a 24 year old would be doing, and then some. Through all this we knew God would take care of him. God always left us with a sense of Him watching over us and holding us up at all times.
I have worked with Vicki for eleven years and have always thought alot of her and Arnie. Although I have never met you I have heard a lot about you and Alaina and know how excited everyone is about this baby and know Vicki is very excited to be a grandmother! I’m sorry to hear you are going through this stressful time, but you are right, God blessed you with this baby girl. He is a faithfull and awesome God and he will take care of all three of you. I will pray for your specific requests above and also for peace. Ayla may have a lot to go through in the first few minutes of her life, but she has already been blessed with Godly parents who love her dearly and will do all they can for her. And as you said, she has a heavenly father who loves her even more. I’ll be waiting for praise reports that you are holding and kissing your beautiful little girl! Love and prayers.
Good news… amniotic fluid level is stable. No new discoveries today. She is growing and is weighing in at 2lbs 11oz. Thank you to everyone that continues to keep us in your prayers. Love you all!
Hi there Corey and Alaina- I briefly met you a few months ago at EBC when you were visiting your mom- she was my doula during the birth of my son, Desmond, last winter. I just want you to know that I am praying for you and your family, and forwarding on your request for prayer warriors to my mom’s church in Missouri (she’s only 4 hours from St Louis if you need anything) and to my aunt’s church in RI. Our love goes out to you and I look forward to seeing how God uses your precious babe for His glory!
Corey, Alaina, Baby Ayla - I have worked with “Momma Vicki” for several years. I am so sorry for all that you have been through and what is in the future. I know that Ayla is very blessed to have God loving parents and Grandparents. I will continue to pray for all.
Dear Corey and Alaina, - Your Mom passed this information to me and my prayers are with you guys and baby Ayla! God bless you all!
Corey and Alaina - We are Rebecca’s aunt and uncle. We will be praying for both of you and Ayla Joy. “Jesus Christ is the same yesterday, today and forever”
You and your girls are in my thoughts and prayers.
Alaina & Corey - Lisa Dillon sent Ayla’s picture to me . . . she is beautiful. God is good & definitely has a plan for Ayla’s life. We will continue prayers for your family & the doctors. Please keep us posted & let us know if there is anything we can do to help in any way.
Dear Corey & Alaina - I am praying for you today and every day. Your story Cory brought so many memories of Mike and Matt’s birth and their time in the ICU. The long nights alone in the waiting room still haunts my mind at times. I can remember the Dr.‘s telling me to make sure I did this and that to stimulate there minds every day and hope they will be normal. The ICU’s today are much different back then I looked at the boys through a glass. It was tough. This may not be the time but I am going to throw it out to you anyway. Jane and I help parents with special needs children with the oils. If we can help let me know.