Welcome to Micro Preemie Monday! Today, we are talking with Ashley about her beautiful daughter Avery. Please make sure to read to the end because there are some exciting updates to her story. I have also included a few medical definitions indicated by * that you can find at the very end.
1. Tell us about your baby
Our daughter Avery was born 12-20-14 at 23 weeks 6 days. She weighted 1lb 5 oz and was 12 inches long. We call her our $5 footlong lol. At 8 days old, they found open air in her stomach after she stopped digesting her feeds. She was transferred from OSU to Nationwide Children’s hospital in Columbus, OH, where she had emergency surgery. We were lucky that it was just a spontaneous hole in her stomach when we were prepared for possible NEC. Since then she’s battled ROP, BPD*, AND pulmonary hypertension* to name a few but she’s a Rock star 🙂
2. How long was your NICU stay? What was the hardest part?
She is now just over 5 months old and were still currently in the nicu. We’ve had quite a few possible discharge dates at this point. (I’m going to go with 7 I think?) The day before the first discharge date they did a research echo and discovered pulmonary hypertension that she never had before. That’s what we’re currently battling now. As frustrating as it is to still be in the NICU, I thank God for that research study! I think the hardest part is realizing life doesn’t stop because you’re in the NICU. It never gets easy to leave your precious baby at the end of the day. My husband and the nurses often have to remind me that it’s OK to go and take care of my home and myself.
3. Do you know what caused your baby’s prematurity?
I wish I knew! I often wonder if that would make it easier to almost have something to blame. Avery is our first child and not knowing why she came so early kind of scares me out of every trying again. I just started having contractions and by the time I got to the hospital in was already 2-3 cm dilated. 13 hours from start to finish and my baby girl was out.
4. How are you and your baby doing today?
Minus the pulmonary hypertension, she’s great! She is now 11 pounds and wearing 0-3 month clothes. She is very curious and extremely sassy. She has the most expressive face. She is the light of our lives.
5. What advice would you give to a new Micro Preemie Mom?
Don’t beat yourself up. Even on your worst day, you’re awesome! Take time for yourself and your significant other if you have one. You’re not doing your baby any good if you’re not taking care of yourself. Celebrate every milestone no matter how small because they go by so fast.
Update #1
Avery had her Heart Catheterization on Thursday 6/11 and she no longer has Pulmonary Hypertension! (Queue to me snoopy dancing lol) they did decide to close her ASD* which was about 10 mm. Since then, she is a whole new baby! She went from being on 2 1/2 liters of oxygen blended with Nitric Oxide to being on .5 liters (and still weaning) and she no longer needs her heart meds Sildenifil or her Lasix. Before when her Cannula would come out of her nose, her oxygen saturation would start to immediately drop. Now, she stats high even when she pulls it out of her nose. We should be home within the next 2 weeks!
Update #2
Just wanted to let you know that we’re home! 180 days in the NICU and were finally home! From 1 lb 5 oz to 12 lbs. We’re so blessed 🙂
I’m so HAPPY for Ashley and Avery and their whole family!!!! I can’t wait to hear more updates on this little Rock Star in the future!
Medical terms from the March of Dimes website:
*Bronchopulmonary dysplasia (BPD): This chronic lung disease is most common in premature babies who have been treated for respiratory distress syndromre (RDS). Babies with RDS have immature lungs. They sometimes need a mechanical ventilator to help them breathe. Some babies treated for RDS may develop symptoms of BPD, including fluid in the lungs, scarring and lung damage.
*Persistent pulmonary hypertension of the newborn (PPHN): Babies with PPHN cannot breathe properly because they have high blood pressure in their lungs. At birth, in response to the first minutes of breathing air, the blood vessels in the lungs normally relax and allow blood to flow through them. This is how the blood picks up oxygen. In babies with PPHN, this response does not occur. This leads to a lack of oxygen in the blood, and sometimes to other complications including brain damage.
*Septal defects, like atrial septal defect (also called ASD): These defects leave a hole in the septum. The septum is the wall inside the heart that separates the right and left atria and right and left ventricles. The atria are parts of the heart that receive blood coming from other parts of the body. A hole in the septum can cause blood to go in the wrong direction or to the wrong place. About half of all ASDs close on their own. Heart surgery and procedures with catheters (thin, flexible tubes) can fix medium and large ASDs.
Wow very happy for Avery and her whole family. A baby is such a beautiful blessing.
As a labor and delivery, nursery, and pediatric nurse I am always happy to read about babies and their recoveries. I am so glad she is doing better and finally got to go home! I hope she doesn’t continue to have medical problems.
I want to give mom a word of encouragement about her baby being born prematurely. Just because one was born premature for an unknown reason does not mean all others will be. Also, your doctor will know that you are at risk and can put you on injections to help prevent early delivery.
I have a friend who’s first baby was a micro-preemie (born at 24 weeks, 2 days) and her second was born at 32 weeks. Both are healthy and happy, but she was on injections with her second to help prevent premature delivery and it helped get her further into her pregnancy.
Lastly I want to say that she is adorable! I really love that little dress in the next to last picture!
This is so amazing! I’m so happy for Avery and her family and how great she is doing! Way to go baby warrior!
Thank you so much for sharing Avery’s story. You bring much needed attention to the struggles and miracles of the tiny ones!
Cynthia @ craftoflaughter.com
Thank you Cynthia!
Such a wonderful story! I’m glad you’ve gotten such wonderful news recently. I can only imagine how great it is to be waking up at home as a family – especially for Father’s Day!
What a precious little girl!!! She’s a fighter!
How beautiful and precious! My son wasn’t a micro but he was a preemie. I have Crohn’s disease and at 34 weeks, my intestines ruptured and I had emergency surgery to remove a portion of my intestines. My son was still in utero and things didn’t go well after that surgery, tons of pain and complications. A week later, while still hospitalized, he came fast and furious. Because of the incision from surgery #1, I couldn’t have a vaginal birth and had an emergent C-section instead. There were mistakes made and needless to say, we both almost died as a result. I coded and ended up in ICU. Thankfully, my son quickly thrived. He was 4 pounds 3 ounces when we brought him home. Over time, I healed as well and by the grace of God we are healthy now! Thank you for sharing your story!
Oh my goodness…I’m so happy you are both OK now. Thank you for reading!
such a blessing that she gets to go home. She is a fighter and she deserves it so much. Her parents too – they deserve to be able to hold her and cherish her and have her there. All the best to her. She’s beautiful!
This is so so sweet! What a gorgeous baby girl and what a strong brave momma you are! I loved the pictures where her cheeks look squishy! I bet it makes you so happy to see those sweet lil baby cheeks! xoxo
so sweet!! I love the $5 footlong reference lol!! I’m from Wisconsin as well 🙂 I live just a little north of Green Bay!
Awesome! We were just in Green Bay to see Thomas. I’m reviewing Bay Beach in tomorrow’s post!
She is absolutely beautiful!! You can tell she’s a happy baby. What a blessing this sweet girl is!
Such awesome news! What a beautiful little baby!
Such a cute baby – very, very adorable!
Goosebumps all over!! Those are some awesome updates. Our oldest was born at 29 week and was 2#13oz due to sudden severe (inexplicable) preeclampsia. Ever since and forever more I will have a special place in my heart for preemies and their parents. And Ashley, I was certain I would NEVER want to be pregnant again, but our second daughter was born 1 day before her due date and my pregnancy was “boring” 😉 After a couple of years and talking to my doctor, we decided the risk was low so we went for it. I don’t know why I’m telling you, you’ll make the best decision for you and your family. Avery is beautiful and I’m so excited for you guys to have her home!!
I got so many chills reading this!!!!!!!! I’m so happy for Avery (and of course Ashley!). Sending much love!!!
What a strong girl and amazing Mama!!!! What an endeavour to go through. A marathon of all marathons. But thank god, it’s almost home time!!!
Shann, I’m going to share your page with my friend I told you about. Her daughter wasn’t a micropreemie. I believe she was born at 30 weeks but she has faced many of the complications of these moms. I think this will be a wonderful resource for her.
Thank you so much Alana! I would love to be of support to your friend 🙂
glad she is home now – she is adorable – I love the last pic of her. Thanks for sharing 🙂
So glad she’s home and doing well! What a little sweetheart!
I’m SO glad she’s home! She is absolutely adorable. That red dress? So charming!
xo, Caitlin
And Possibly Dinosaurs
She’s just beautiful! Your story is so inspiring and emotional. What a strong family! Thanks for linking up at the Manic Mondays blog hop!