If you’re reading about Ayla for the first time, here are a few things might like to know.
- We’ve known for a while that our baby girl would be born with VACTERL, a rare condition with a grouping of non-random birth defects. There is no known cause for VACTERL, it just happens.
- We expected Ayla early, but not this early.
- We knew she would be born with a missing kidney, and a missing thumb on her left hand.
- We anticipated other problems, but hoped we’d discovered everything prenataly.
- Ayla was born in the afternoon on Tuesday, April 2nd, at Barnes Jewish Hospital in St.Louis, MO.
The Short Version of What Happened
Alaina’s water broke at 12:15am Monday, April 1st. We rushed to the hospital. St. John's ran a few tests to confirm, but they came back inconclusive. Better safe than sorry, they notified Barnes Jewish Hospital in St.Louis. Barnes didn’t want to wait, so they sent the helicopter to get Alaina. I sped home to get our things and started driving to Barnes. Alaina arrived at Barnes at 6:15am. I arrived at Barnes at 7am.
I’ll fast forward through the next 36 hours of sleepless anxiety. More water, then bleeding. Constant fear and worry. Every couple of hours, three or four nurses would rush in because Ayla’s heart rate would drop and things were close to emergency status. They were prepared to move us to the operating room at any time.
After a day and a half of this, two steroid shots to help Ayla’s lungs develop last minute, an epidural, lots of water, oxygen, uncontrollable nervous shaking, a dozen nurses and doctors and every gadget available on the maternity floor, it was time for Alaina to start pushing.
Birth
My parents were already here. My Mom sat at Alaina’s bedside keeping her calm through each contraction and during each onset of the shakes. Alaina’s parents left their house in Massachusetts on Monday afternoon and drove straight through. They made it to the hospital just 20 minutes before Alaina started pushing.
Alaina pushed for about two hours before Ayla was ready to arrive. As soon as Ayla crowned, a team of 15-20 people poured into the room. They raised Alaina’s bed to standing height, and set up the table they would use to assist Ayla. The Peds (Pediatrics) team was there, the Neonatal team was there, surgical staff was there, and the transport team was on stand-by. One more push and Ayla was out. In seconds the doctor had placed Ayla onto the table and the team(s) descended upon her.
Scary Beyond Words
In the first few seconds of life, Ayla gave three, short, squeaky little cries. When we heard Ayla squeak we were elated. The sounds she made indicated that maybe she could breath! Maybe things weren’t as urgent as we thought.
Unfortunately, it only lasted for a second or two. I was at Alaina’s side, holding her head to mine, looking over her toward the table Ayla was on.
Ayla’s little body went limp, and started to change color. Alaina could see in my face that things weren’t going well, and I held her tightly to make sure she couldn’t turn to look. She kept asking me “Is she ok? Is she ok?”. I kept telling her that Ayla would be ok and that we had to "let them do their work". We prayed, they worked.
The Peds team rolled Ayla around and started pushing tubes into her mouth and nose. In seconds —that seemed like hours— Ayla started moving again. I could tell how weak she was, her little arm moved slowly and her leg could barely lift from the table. The Peds team inserted a tube and they were breathing for Ayla with a little green balloon they squeezed by hand. They carefully placed more tubes and sensors, and continued to check her out and support her. The transport team came in and prepared to take her over to the NICU at Children's. They packed her safely into this blue cart covered with gadgets and life saving tools. The three transport ladies swept her away, though we’re told they were stopped briefly by the Grandparents waiting in the hall.
The nurses finished working on Alaina, and I told them we needed a moment. Our terrific nurse, Rasheda, kicked everyone out. You can probably imagine just how hard we cried. We spent a few moments crying with each other, mixed with relief and an overwhelming sense of fear, convinced that we were sharing the same bad dream.
Ayla was now in the NICU, and there was nothing we could do. Alaina spent some time recovering and the maternity staff moved us to a better room where we could both rest.
Something New
Alaina was still immobile, so at around 9 P.M. I walked over to Children’s to visit Ayla for the first time. I was so nervous that I thought I’d be sick. Our nurse that night, Mallory, was incredibly sweet. She showed me how to enter Ayla’s NICU suite, where to put my things, and how to scrub in. Then she brought me over to Ayla. I was standing over Ayla’s right side and looking down on her sweet little face. I said something like “Hi, Ayla. I’m Daddy.” She was covered with tape to hold the hoses and wires into her nose and mouth. I was happy to see her, but worried by her look. Her eyes didn’t look okay, her nose was twisted by the plastic tubing and her lower jaw was smaller than we’d expected. Mallory showed me that her eyes and nose were fine, it was just the tape pulling on her tiny little face. As I leaned over to look more closely at her, I realized there was in fact something else wrong.
Ayla’s left ear is missing. Choking back tears, I mentioned it to Mallory and she pointed out that Ayla’s little ear had started to grow, but it was out of position. She has the start of a small deformed ear on her cheek closer to her mouth. This was just another thing, I was not prepared for another thing. Mostly trying to reassure myself, I told Ayla “It’s ok. It’s ok, kiddo.”
Several deep breaths later…
I checked her hands. Even without a thumb, her little left hand is beautiful. Her small chin (Micrognathia) is a little more severe than anticipated, and a little worse on her left than on her right, but her little lips are so cute. Her chin will almost certainly require surgery in the near future. She has long feet, soft skin that smelled like soap, and pretty eyes. She’s thin and kind of small, so we can’t wait to see her gain some weight. I spent some time with her, talking to her, gave her a kiss on the forehead, told her we loved her and Mommy couldn’t wait to see her, and then headed back to Alaina’s room.
Alaina was still at Barnes and the walk through the two buildings was slow, and incredibly long. I couldn’t think of how I would break the news of Ayla’s misplaced ear. I sat on the edge of Alaina’s bed, and sobbed as I explained how Ayla was doing and what I’d just found out. Again, mixed with fear and relief. We hadn’t slept in almost 48 hours and it was just too much. We were very broken and very tired.
Alaina had several check-ups through the night but we both managed to get some sleep. We got up and went straight to the NICU to visit our little girl. I was nervous for Alaina as she hadn’t really seen Ayla yet. I knew that Alaina wouldn’t be bothered and that we’d both love Ayla no matter what, but actually being there, in real life, was much harder than I expected. Alaina and I broke down again when we entered Ayla’s suite, but we were so happy to see her and touch her. More relief. More fear.
Surgery
Ayla’s first Trachea-Esophageal surgery was on Friday morning. It was originally scheduled for Thursday morning but there were two emergencies so Ayla had to wait. Surgery went pretty well. The distance in Ayla’s esophageal connection was a little greater than Dr. Saito (her Surgeon) had hoped, but the connection has been made and her trachea has been repaired. Ayla was chemically paralyzed for 24 hours to keep her from moving while the repair began to heal. She has a feeding tube that passes through the connection so they can start to feed her while she continues healing. Feeding will hopefully begin in the next week or so. For now she’s just getting essential fluids, lipids and sugars. Alaina has been pumping and Children’s is storing all of her breast milk to give to Ayla when she can start taking it in.
Vertebrae, Ribs, and Kidneys
You might remember learning about VACTERL in previous posts about Ayla. We knew, prenatally, that Ayla would be born with TE, R, and L. Turns out, she was also born with V.
Ayla was born with one extra vertebrae, and two extra ribs (one on each side). Fortunately, there is nothing abnormal so they shouldn’t affect her quality of life. There’s a good chance that she’ll never have any problems with them. Right now, no concerns, no action needed. She just has more than most of us.
We also thought that Ayla had just one kidney. We’ve learned that she actually has two, but they’re fused together on the same side of her body. This makes more sense with VACTERL. The doctors are pretty happy about this because she’s getting the full volume on filtration from her kidney(s). So this is super good.
Slow Info
I’m sure it’s been aggravating —for some— to be receiving info so slowly. Thanks for being patient, and we’re so glad that you care so deeply about Ayla and about us. The thing is, we needed time to process everything before we brought it to you. We also wanted to make sure we knew more about the situation before we tried to relay these details. Going forward, information should start to relay sooner.
Visitors
This is tricky. There are a number of rules about visiting the NICU. If you’re interested in visiting Ayla, or visiting us, call us or text us, send an email or a Facebook message and we’ll try and make it work. We’re going to have to say no, sometimes. I apologize ahead of time if it doesn’t work out. Please don’t be upset if we do have to say no. Family will come first and the schedule will start to fill up. We love you, we want you here, but it just might not work. DO NOT HESITATE TO ASK!
but...
PLEASE ask before you come visit. The NICU is very secure and you’ll have to be with Alaina or myself to come back here. We will not be here 100% of the time.
Pictures
Here are some pictures of Ayla. If you’re a new parent or are expecting, I really hope these pictures don’t cause you to worry. They aren’t graphic, but they could be a little much for some to see.
This brings you up to speed, mostly. Since day one we’ve gotten to: hold Ayla, be with her as much as possible, kiss her, hold her hands and tell her how much we love her. The doctors and nurses at Children’s, and previously at Barnes, are working miracles. They are all sweet and gentle and loving to Ayla, and we couldn’t be happier with this place.
There is SO MUCH MORE to say about this whole experience, and about our life right now. We owe so much to our parents and to our families and friends. To each and every one of you, thank you.
I’m going to write another post just to thank everyone who has shown us support so far. Look for that later this week.
Please pray for Ayla, for us, for Ayla’s doctors and nurses, and please pray for our families.
Corey and Alaina
She’s beautiful and you are all so blessed to have each other. Love n prayers, Angie
Dear Corey and Alaina - We will keep the medical staff, your families, you all and Ayla in our prayers. Your little girl rests in the Hands of the Great Physician. Rest and trust in Him. (we go to Jacobstown Baptist Church where Ed Hlad is pastor) Sending love and prayers from NJ - The Krushinski Family
Praying for the most for your lovely baby girl. May God’s peace and grace continue to comfort you and give you strength as you go forward. Thank you for taking the time to update us.
What a hard, hard time. I didn’t relize all you had been thru - all she had been thru. i simply cannot imagine the physical and emotional exhaustion. But what a story she will have to tell - her mommy in a helicopter! So glad that part of it is over; you will adjust and you will figure it all out, and she will bless the world. Of that I am certain. This is not what you had hoped for that night we all visited in the hospital and welcomed Maria into the world, but it will be good, just a different good. You have the strength, the love to guide her and the wisdom to help her as she faces the world. I thot she looked remarkably good in the picture with her eyes wide open - kinda like she’s saying, OK, I’m here; let’s get ‘er done so I can go home! God bless you in the days to come.
Just read your beautiful post with tears in my eyes. God has blessed Ayla with such loving parents, competent doctors and nurses, and a loving, supporting family!! Prayers continue for your precious baby daughter!! The pictures are wonderful, and helped us to see the tiny one we are praying for! Thanks for sharing your story and your photos! God Bless you all!!!
Beautiful. Sending prayers your way.
Corey, I forgot to thank you for all you wrote. It is so clear - you strength and love for “your girls.”
Thank you, Corey, for the well written blog! Sandi, Alaina’s aunt, has fed me information as it has become available. You both have a beautiful daughter!! My husband and I have been praying together for Ayla, the two of you and the whole epically staff. We will continue to do so as you walk this journey. Blessings! Miriam Richardson - Spokane Valley, WA
I am a good friend of Ayla’s great aunt Sandi (actually, I grew up with all of the Bennets!) We have been praying for Ayla and all of you since Sandi & Karen first shared the requests…So love that we can see your blog and pictures of precious Ayla. Know that she is prayed for daily!
Ross & I are so happy that you, Alaina & especially Ayla are doing so well. Ayla is a beautiful girl & we’re so happy she is finally here. We will continue to pray for all of you. If you need anything please do not hesitate to ask we would feel very blessed to help in any way.
She is such a beautiful little girl and so blessed to have you two as parents! Continued prayers and love for the three of you!
Ayla is GORGEOUS! We have been praying for her!
She is absolutely beautiful! Can’t wait till you all come home and I get to hold your little peanut! Sending lots of love and prayers!
Thank you for sharing, Corey. You expressed everything SO Beautifully! I cried through the whole thing, imagining what all you have been through. My sister’s first baby had many complications and it was difficult, but not like you have experienced, Bless your Hearts! I have been SO Concerned about you all, and I PROMISE you I am PRAYING continually! Our God is GOOD, and we know you are ALL in His Loving Care! OXOXOX!!!
She’s simply perfect! Our family will remember yours in our prayers often. Love in Christ, Lio and Jen Fuentes (also from JBC, NJ)
Praying for Ayla and for, you two as well.
God’s blessing are beautiful. Miracles on earth are worked everyday at Children’s. They are a wonderful hospital and Ayla is in great care. I can’t wait to tell her I love her in person. Love you all very much.
We are joe and Sheryl geislers neighbors and are including your precious family but mostly your beautiful Ayla that our god and his angels will surround and uphold every single need even before known.
Alaina and Corey - Thank you so much for sharing your journey with all of us. We admire how brave and strong you both are. Ayla is beautiful!! We hope to meet her before we move back to Chicago. The boys are happy for you they said “Ayla is so cute and small”. Our family will continue to pray for you all… May God Bless You and Keep You In His Loving Care. The Sosa’s
What a wonderfully sweet beautiful baby girl!! Congratulations to you both and everyone involved will be in my thoughts and prayers. God Bless
Hey! She looks absolutely beautiful. We are praying for you guys!
Congrats to you guys!! Ayla is beautiful! We are sending positive thoughts & prayers to the three of you. Ayla is surrounded by love from all her family, friends, doctors & nurses! You two are strong & great parents! Congrats again on being the proud parents to baby Ayla!
She is beautiful! We have been praying for your new family of 3 and will continue to do so. Thank you for taking the time to update everyone on your journey. There is no doubt that you are all very loved! Welcome, Ayla!
Corey and Alaina, this amazing story of little Ayla made me tear up just like most of us reading it.. But, you know what… Seeing those sweet pictures of her little face, with that little ear, missing tiny thumb, made me smile… And cry more. Only a smile a mother can understand, right, Alaina? Those places just need kisses. So precious. So humbling that The Lord makes NO mistakes, and how AMAZING it is that He understands all our worries, all our fears. And the powerful love that He gives us for our children is beyond words. I will be praying for you. You can count on it. James 1:17 “Every GOOD, and every PERFECT gift ” ..you write that out, frame it, and put it where you can see it everyday.
What a precious little girl you have and how blessed she is to have the two of you for her parents. Can’t wait to meet her when you get home. We continue to pray for Ayla, you, and your families. Our love to all of you!
This is so beautifully written. I was crying in the first half reading how Corey held Alaina’s head turned…and you 2 comforting each other. The fear in that moment and the joy at the outcome is overwhelming to read. I have chills at this. I am so happy for you both. She is beautiful, a cute baby! The video is amazing. The pictures are wonderful. She is your little gift! Prayers and joy
Corey and Alaina - my mom (Shirley Bell) thinks the world of you guys and has shared your story with us as you’ve moved through the pregnancy. She’s passing along all of your facebook updates and we are praying for you and Ayla. Prayers are being answered through the small victories amidst an overwhelming situation. Praying for strength, healing, peace, and rest for you all!
What a beautiful baby girl!! She is precious!! I was praying specifically on Friday that the surgeons would be able to repair her esophagus in the one surgery. If they are unable to connect it, they wait for the baby to grow and it makes your hospital stay sooo much longer. So I am SO HAPPY to hear that her esophagus is repaired!!! GO AYLA!!! Will keep praying for Ayla and for your family! -Samantha (NICU nurse)
She is so beautiful & so blessed to have all the love surrounding her!!! Prayers continuing for you all.
She is absolutely beautiful and couldn’t have better parents. How blessed she is to have such Godly loving parents and Heavenly Father. She was carefully woven in the womb and nothing was a mistake. Thank you for sharing your journey with us so we can pray with you.
Good morning Corey and Alaina - Thanks so much for the update. I pray for Ayla every day. She so touches my heart. My women’s Bible study group, small group fellowship and Sunday school class are all praying for all of you. I can’t imagine how rough this has been. Just know that God is with you through it all. Now, I would like a word with Ayla. Dear Ayla - You are such a courageous and beautiful little girl. You are so loved and cared for. Few, have such influence and impact on the hearts of others so young. You weren’t even born yet and you were stirring the goodness, care and concern in so many. I know that God has an amazing plan and purpose for you. You are such a survivor. Get lot’s of rest and healing. I loved your pictures and will share them with all of the folks who are praying for you. Your eyes are so tender and wise. Your tiny body is getting stronger every day. I will continue praying for you daily. You have touched a place in my heart few have touched. I would love to have the honor of meeting you some day. Hang in there sweet one. You have an awesome Father in heaven and an amazing family on earth who will support you every step of the way. In His Love and Care
Your Southwest Campus family is praying for you! Congratulations on the arrival of Ayla!
What a beautiful baby girl, beautiful family, and beautiful documentation of your journey. I’ve been a NICU nurse for many years, and yet your heartfelt openness about your experience brings tears…. I would love to share your blog with other NICU families, so they might get comfort from your strength, and might be a source of support through encouragement and positive thoughts…
You haven’t heard from us, as we have been out of town, but we want you to know that you are in our prayers and we send our love. I remember the first time that you came to SW and you have always been special. You have a special little girl and you will be special parents!
Ayla is beautiful, especially in the picture of her crying!
We are praying for all of you. Please let us know if we can do anything at all. In God’s Love, Steve and Darla
Corey and Alaina - Your daughter Ayla is beautiful! You are so lucky to have the support of a wonderful family and hospital staff. Vicki has taken care of me for many years through United Stationers and I will miss her terribly. But I know she is going to be such a blessing for you to have with you. She is truly one of God’s Angels and will be an Angel for both of you and Ayla. I will be praying for all of you.
Ayla has been in my prayers along with her family. We attend Southwest campus and only know you by sight. Please know that many, many people are praying for all of you. May God guide The drs. in every thing, and I know you already know and believe that Our Lord and Savior is with you every step of the way. We will continue to keep our prayers centered around your precious Ayla. Love and Blessings
Finally had time to check out your page, and I made the blog! I feel like such a superstar. I believe you’ve left out a little story about a feisty baby girl who likes to shoot certain, um, body substances, three feet when I’m taking care of her!
God bless the 3 of you. I will pray for you all. She is so cute…
Corey & Alaina - I am a friend of Vickie’s. I met her when my daughter was going through breast cancer . Your mom was so kind to me and my family. We try to stay in touch , but maybe not as often as we should. Any way , we were coming up to the 2nd year of my daughters death . Your mom was so good at sending a card to me , and I realized I hadn’t heard from her in awhile and maybe something was wrong with her. I started calling and reached another friend of ours, and she told me what all Vickie and her family has been going through. Vickie finally sent a card and told me how to get to your blog. What an excellent idea. After reading the blog , I felt that I knew all of you personally , especially baby Ayla . What a little trooper she is. And she is beautiful !!
She is just as God planned her to be . God already knew just how he intended to use Ayla in this life. And he will show her the way to achieve all that she can be. I promise you this , if you don’t make a big deal over her handicaps , she will grow up to be a beautiful young lady full of grace and confidence in herself. As a mother of 3 daughters , I know this for sure.LOL I want you all to know that People here in Louisiana will be praying for your family. I will put her on our prayer list at church . Please continue your blog with lots of pictures, so we can keep up with little Ayla. I know that Ayla’s parent’s are pretty awesome for having gone through so much too ! How frightening it must have been for you. But you both have learned that knowledge is power. The more you researched the problems your baby would have, The more strength God has given you both to face this head on.
Your little girl has so much love and peace around her right now , That I am absolutely sure she will pass it all back to you both 10 fold. Ya’ll take goods care of one another , and I’ll be checking back in from time to time to see how that little doll baby is doing. Christian love & Blessings to all.