Two months. Nearly two months since we’ve been home with Ella and can spend each night as a “somewhat normal” family. By that I mean all of us sleeping under one roof, not separated by time, work, highways, or bridges. It was surreal bringing our little angel home, leaving the controlled environment of the hospital and entering a world of unknowns. After 6 months of living in a NICU, we were finally home… finally able to watch her sleep in the middle of the night, kiss her in every single room of the house, bathe her in her own tubby, and eat a meal with us all around the kitchen table. It took a long time to get to this place…so let me rewind a bit.
The week of November 16th Ella was to be transferred from CHOP to LIJ/Schneider Children’s Hospital in New York. This was the most stressful and grey hair-inducing week of my life. To make a very long story short, within a span of 5 days Ella ended up in the operating room twice and coded once. It was the second time in her short life that we almost lost her. Blood started coming up from her trach and quickly obstructed her airway. She stopped breathing, turned blue, and her heart rate went down to 44 (a number I will never forget). Again, God was with her. After giving Ella breaths with an ambu bag, a nurse was able to get her to come back up. Clearly, Ella didn’t want to leave CHOP and was pulling out all the stops to avoid it. So when the day finally came to transfer her to LIJ we made sure to keep it a secret.
Our stay at CHOP was entirely due to medical necessity; our stay at LIJ on the other hand was entirely due to the bureaucracy of New York State’s Medicaid system. In order to take Ella home we needed to have nursing care at home, something our private insurance doesn’t cover. This was the worst part. We knew Ella was stable enough to come home, yet because the Medicaid paperwork was taking forever to get to and through Albany Ella had to remain hospitalized. And each day we thought we were one step closer to taking her home, there’d be a setback with the paperwork damaging our hopes of ever being together as a family. Thanksgiving passed, Christmas passed, New Year’s passed, my birthday passed and we were still there. I tried to remind myself that though it was disappointing to celebrate such events in a hospital, away from home, it would have been more devastating to celebrate those days without my beautiful baby girl. Finally, the day came when we were approved for the Care at Home program through Medicaid. We were all on cloud 9, but still cautious given our past history. We had to tell Ella a little fib – that she was going to Disney. After all, we didn’t want her pulling any of the same funny business like when we were due to leave CHOP. Erik and I both kept saying we won’t believe it’s real until we walk through our front door with Ella in our arms. On January 18th it happened.
We are home now and there are moments Erik and I still can’t believe we made it to this point. Though being home has brought an entirely new set of challenges. We struggled to get the Medicaid and now that we have it we’re struggling to get qualified nurses. Taking care of a person with a trach can be intimidating to some; taking care of a BABY with a trach can be outright scary to even the most seasoned nurse. So until we have a full and competent staff life will be a bit hairy in the Monaco household. I am indebted to my mother who is staying up nights with Ella. Without her we would have never been able to take Ella home. The days are long and the nights are longer. She gets continuous care throughout the day and in order to avoid a code situation like at CHOP her cardiac and respiratory status must be monitored 24/7. However overwhelmed, stressed, and sleep deprived we all are, we wouldn’t change having her home for the world.
Ella is doing fantastic. She is a whopping 14lbs 11oz and growing longer by the day. She is extremely active. In fact, her nickname is Little Zilla (short for Godzilla) because is not unusual for her to make her entire crib shake. Ella smiles, chuckles (this takes major entertainment on our part), makes her version of a raspberry, shakes her head NO, slaps her legs when excited, rolls to her side and to her back, and is now learning how to sit unassisted. She has a hearing aide that she loves to take off (a major challenge for us) and is constantly popping off her HME (the little sponge on the end of her trach). She plays with toys and is even learning to compensate for her lack of the thumbs by grasping things between her index and middle fingers. She was recently evaluated for Early Intervention Services and will begin receiving therapy in two weeks. She’ll get occupational therapy 3x/week, physical therapy 3x/week, speech/feeding therapy 2-3x/week, and special education 1x/week. Phew…she’ll be one busy lady and I’ll of course be her secretaryJ.
From a medical standpoint: she is going to have the first of two pollicization surgeries around 1 year of age. This is when docs will move her index finger into a thumb position so that she’ll be able to grasp things without limitation and eventually do things like button a shirt and use scissors. Oh how we take for granted all that we can do with thumbs! Around one year of age she will also be reevaluated for jaw distraction surgery and a repair of her cleft palate. Right now her jaw is too tiny for the device used for the jaw distraction and she doesn’t open wide enough for the surgeon to get into her mouth to do the cleft repair. Ella’s heart problem is still under control, with no obstruction presenting at this point. Because it is such a rare finding, she will have to be closely monitored and get an echocardiogram every two months. There is more, but I’m drained just writing about it so I will it leave there for now.
So we’ve had a bit of bumpy road this past year and a half and I’m not sure when it will get easier. People often ask me “how are you doing it?” Honestly, never in a million years did I think I could do this and sometimes I still think how in the world am I going to do this and get it all right for Ella. I’m never going to make Ella totally healthy, give her new thumbs, or help her brain grow faster. I’m doing the best I can and by that I mean giving her the love and support necessary to meet her greatest potential in life – whatever that potential may be. I will never give up on her; she hasn’t given up on us. For many months I’ve been underestimating this baby and frankly it was out of self-preservation and protection. I’m learning that no child should be doubted or low-balled for such selfish reasons. Ella is still a child of God and I’ve decided to let her show me the way. And so you wonder how am I doing it? I just do. Life is funny like that…we surprise ourselves and somehow rise to the occasion when least expected, especially when Love is involved.
I want to say that many of you have brought countless smiles to our faces. To those of you who have sent gifts, brought over hot meals, went to the grocery store, pulled all nighters (you know who you are): thank you from the bottom of our hearts. People have taken their time, money, and energy to help make are situation a bit easier. And please know that you have. Many of these people have never even met Erik, Ella, or I, yet have acted as family and friends would. These are true acts of kindness and generosity for which we will be forever grateful. Thank you to those of you who continue to pray for my dear Ella and for her health, for our strength and perseverance, and for the hands that care for her. Prayer is the most important gift of all, for without it I don’t believe my little angel would be with us today. Lastly, in such a bitter situation thank you for helping us see the sweetness in people.
To Ella: Thank you for surprising me everyday with the incredible amount of strength that flows out of tiny you. Ti amo.
Much love and gratitude,
Nina, Erik, and Baby Ella Rose
P.S. Apologies for not responding to the many emails I’ve received over the last 7 months. While I did not always get an opportunity to write back, please know I did read them and they did comfort me.