Ella's Story

Over a year ago I was offered to share Ella’s journey. You probably thought since you never heard from us that I wasn’t interested. It was quite the opposite. I wrote 10 drafts easy. It seemed so overwhelming. Was this really our story? Did this really happen? So I wrote another draft because obviously I was exaggerating. This didn’t tell our whole story, not even close. I wrote again. Now we are hitting 2yrs on February 15^th since Ella’s Aortapexy and 3yrs on February 8^th   when  Ella joined our family 5 weeks early and I am attempting to share it again.

                I was diagnosed with an irritable uterus at just 18 weeks and by 22 weeks I was making weekly trips to the hospital to stop the contractions.  I prayed every night to just hold on until she would be safe to enter this world. Super Bowl night I was only 34weeks 6days and I was in so much pain and tried everything from laying on my side to drinking a ton water. It was time for my weekly visit to L&D. I went in and my contractions were only 2 minutes apart. I had previous c/s so this birth too was a c/s. When the morning came and my contractions came closer they told me my uterus was dialating and they were sure it would rupture and I was heading in for my c/s. I was now 35weeks to the day and that was the hospitals minimum for delivery before they shipped you to Boston. Man I wish I was 34weeks and got moved. Ella was born perfect as can be. She had trouble breathing and they sent her Boston. I had complications myself and spent the next 4days alone without my baby. I wish I had been transferred with her.Then she was moved back to an area hospital and I spent the next 3 days holding her as much as they would allow. I was discharged on Valentines Day without my newest love. It was aweful. When I went every day for feedings. I noticed a noise and trouble breathing. I was told this was normal preemie behavior. I didn’t know, I never had a preemie before.

                Ella was discharged with a visiting nurse who came to check on the both of us. Since we were home I noticed more and more “squeaks” coming from her and then the chest retractions started.  All of the Dr’s told us it was normal but the nurse, she listened. She told me to keep my video camera out. She told me to fight until I felt safe. She suggested I go to the ER with Ella in the city. I packed up my baby and we went. That was our first of many stays. She was diagnosed with aspiration on thin liquids and LM. We were referred to ORL for follow up.  We were told it is really a common problem that it will be outgrown. However, if it persists by 8months they would do further testing.

                I was exhausted. Feedings took 1-2hrs then 20minute breaks and it was time to eat again. My husband was working 16hr shifts 6days a week so I was on my own with Ella and her older sister who was just under 2yrs old. I remember one night I just couldn’t keep my eyes open. Jeff told me to go to bed and he would do the next feeding so I could survive the night. I just fell asleep and my door was flung open and this little baby was thrown at me. Jeff was scared. She was gasping so bad with her chest retractions. I went into calming mode. If I got upset then she got worse. I sang to her and rocked her until it passed. This was our life. Scared all the time. Everyone thought we were exaggerating. Ella still didn’t cry at this time. How could a baby be so sick and NEVER cry. Everyone thought we had the happiest baby in the world because she was so quiet. They didn’t get it. She was quiet because she COULDN’T cry not because she didn’t want to.

                Months go by. Her breathing is getting worse with age. She is now 6months old. She couldn’t roll over, cry, babble or anything vocal. Time for another visit yet again. I demand more testing and we go in for the scope.  My poor baby only had 30% of an airway. The Dr’s now want an MRI and it was a 2month wait.  At this point all of my friends who had babies this age were so excited showing pictures of their little ones eating food. I was so jealous!! My baby couldn’t even sit up yet never mind eat food. She had zero muscle tone. We later found out that all of her energy went into breathing so she wasn’t capable of using her muscles. Ella wasn’t hitting a single milestone but I had the happiest baby on the planet who never cried so still no one understood it.

                The worst phone call of my life came from a Dr I never knew anything about. …….. a Cardiologist. He called me with Ella’s MRI results. I was so scared. He told me an artery was strangling her from the inside. It came off her heart and wrapped around her trachea. He wanted her in surgery the following week. The week before her first birthday. I asked for 1 thing normal for this amazing baby. Please let me give her a normal first birthday. He said that was fine. Ella went in for pre op on Valentines day ironic that it was also the same day I left my baby in the hospital one year prior. The next day she went in for surgery. When she came out her squeak was gone!!!!!!!   She made one more trip to the ICU 3 weeks later when she had so much fluid on her heart that we were seconds from losing her. She never cried. She never warned us it was coming. This “quiet” girl couldn’t tell us anything and it almost cost us her life! She had a drain put in and we were home in a couple days.

                Ella was 15months old and I heard her first laugh!!!!! Oh man, I will never forget that day. I cried and cried. It was so amazing to hear her laugh.   With OT, ST, feeding team and Nutritionist we were able to get her caught up.

                Ella is turning 3 next month. She is insane and I love it! She can climb anything and does it all the time! She has no fear. She feels no pain.  We have overcome some severe texture issues with food. She doesn’t eat a wide variety but she eats a balanced diet. I can hear a stridor still if she is laughing extremely hard and it sends shivers down my spine. When she is having a 3yr old fit and screaming at the top of her lungs because she didn’t get her way I remind myself that I wanted this. I didn’t want the quietest baby in the world. There is a drive behind Ella. A drive that is going to take her far in life. We have had quite the journey and the new chapters keep getting added to it.

-LM Supermom Lisa