Tuesday, November 9, 2010
Wednesday, October 27, 2010
Dear Friends and Family,
I am writing on behalf of my mommy who is ashamed to be considered a total blog slacker. Now I won’t sit here and make excuses for her. But, seriously a lot has happened in the past 6 months. I’m not gonna lie…though I know I’m the light of her life, I’m also nothing short of a handful. Anyway, enough about her, let’s talk about me.
I am doing awesome. I turned one in August!!! This was a huge milestone for me and my family, especially since the doctors were not too sure I would survive long after I was born. Clearly God and I had other plans J. Mommy always says she knew I wanted to be here since I started kicking like a maniac in her belly. BTW, that has not changed much. You should see my legs – they’re enormous, but in a good way. Some might say thunder thighs; I prefer muscular and healthy. Future soccer star…watch out. So yes, though I go through a lot and get poked and prodded on a daily basis, I truly am a happy baby. Someone once told mommy, “Ella doesn’t know she has a syndrome or think that she is medically fragile.” And while that statement is quite obvious given I’m baby, if you met me you would quickly learn that it couldn’t be closer to the truth. Someday I will figure out that I’m different than most people – that I don’t have ten fingers, or breathe through my nose, or eat through my mouth (I could go on and on here). But, right now I am content just being me. I know no different. I smile, laugh, and love just like any other baby and want to be loved just like any other human being.
On the developmental front, I am progressing quite nicely if I do say so myself. I am doing things that mommy and daddy weren’t sure I would ever do. I started commando crawling over the summer, then recently it turned into a 3 point crawl with a right leg scoot. I am very creative (did I not mention strong willed???) and so I decided I should improvise when it comes to crawling as well. My PT said she doesn’t care how I crawl so long as I get from point A to B. My parents are huge motivators for getting me to move and so is the laptop. I really love it when mommy plays elmo on youtube and then hides the laptop under a dishtowel for me to find. That’s when I boogy. I just started cruising around the couch and I am learning how to pull to stand (this is difficult for me since my forearms are underdeveloped, but don’t worry I will figure it out soon). In the language department, I am able to sign “me”, “more”, “yes/no”, “hi/bye”, and “all done”. I respond appropriately when mommy says, “touch your belly”, “stomp your feet”, “clap your hands”, “so big”, “hands up high”. When she says “oh my goodness” I put my hands on my cheeks (very cute). I am taking tastes of baby food by mouth, not for nutrition, but rather just to keep up oral stimulation. I also started to open up my mouth a bit more and now I can even make purposeful noises past my trach. I especially like to pull out new noises at bedtime (like I said I’m just like any other baby, I’ll try anything to delay going to sleep). Some might say manipulative, I prefer smart.
On the medical front, I’ve had a few bumps along the road. Last Spring, I had a bad staph infection at my trach stoma site. Trust me, “impressive” and “I’ve never seen this before” are two comments you don’t want to hear from a doctor…highly reassuring. I was hospitalized at CHOP last June when going for a routine consult. I had a nasty case of Rhinovirus, which is like the common cold, but when you’re dealing with a trached kid it doesn’t seem so common. So far this Fall I’ve had another cold and then croup without being hospitalized (thank God). In September I had major hand surgery to move my right index finger into an opposable thumb position. I was in a full arm cast until I managed to remove it 4 days post-op. This little stunt sent my mom and nurse in a frenzy down to CHOP’s ER in the middle of the night. My parents were happy when I went into a hand splint (until of course I figured out how to remove this too…hourly). Today I went to CHOP to see the surgeon for a post-op visit and he said my new thumb looks excellent. It even started to move a little yesterday. But, now the real work begins – I have to exercise my thumb daily and I go to outpatient hand therapy 2x/week (this added to my already busy schedule of 11 other therapy sessions per week plus Dr. visits). I should be moving it more in the next two weeks and if all goes well I should be pinching with my new thumb 6 months from now. Later this year, I will undergo the same surgery on my left hand. As far as my jaw and cleft palate surgeries, mommy and daddy are taking me across country to meet with some of the top experts in their field. It will be a difficult decision to make since many docs have differing opinions on what methods to use for the jaw distraction. Because there aren’t many kids out there with Nager there isn’t much research on which is the most effective/least risky. Most of their opinions are based on personal experience with patients. I will likely have eye surgery this year as well. My eyes tend to wander outward from time to time and so to fix this they have to weaken my outer muscle, which will force the inner muscle to get stronger. Hopefully, they can combine at least two of these surgeries so that I won’t have to go under anesthesia so many times.
Mommy and daddy are hanging in here. They are doing the best they can to take great care of me. They are often sleep deprived and extremely busy - not only handling my medical care, but also dealing with issues involving insurance, Medicaid, medical supplies and equipment, nursing coverage, therapies, and doctors visits. Some days are more chaotic than others and they are still trying to take it one day at time. People say there is no book that teaches you how to be a good parent; well there is certainly no book on how to be a good special needs parent. You got to go with the flow and just hope and pray to God that you are doing right by your child. At the end of the day (or even at the beginning) my parents may be tired, stressed, and overwhelmed, but they say I am worth it all. They tell me that I bring them more joy in life than anything they have ever experienced. And hey – I feel pretty good about thatJ.
Thank you everyone for your help this past year and especially for all your prayers and good wishes. I know you can’t truly understand unless you are going through it yourself, but many of you through words and actions have shown us that you are trying to understand and that means the world to us. Please continue to keep our miracle baby, Ella, in your prayers. We ask for prayers that He continue to make her healthier and stronger in body, mind, and spirit each and every day. Please pray for guidance for Erik and I that we make the best medical decisions for Ella, particularly concerning her upcoming surgeries.
I also want to thank my dear friends Laura Leonardi and Maureen Alchermes who out of the kindness of their hearts are hosting a fundraiser for Baby Ella. This is a beautiful gift to Ella, Erik, and I and will help greatly with the medical expenses we’ve been accruing for Ella. The fundraiser will be Friday, November 5th from 5:30-9:30pm at the Barefoot Peddler in Greenvale. For more info, you can email email@example.com or firstname.lastname@example.org
Much love always,
P.S. Apologies for poor grammar/spelling…I did write this at 3 in the morning while staying up as Ella’s night nurse.
Monday, March 15, 2010
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.