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.
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!
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.