Just pictures! Enjoy! Now to get an early start on Christmas decorating!
Just pictures! Enjoy! Now to get an early start on Christmas decorating!
Unlike her friends, Marielle chose not to have an elaborate Sweet Sixteen party. Here in NYC, parents seem to go over the top with these ridiculous parties which resemble mini weddings. It is not unheard of for costs to go way over $30,000!!!
I was able to have one of our local bakeries make a terrific zebra cake filled with Strawberry Shortcake in just 24 hours! Talk about customer service. I shared Marielle’s transplant story with them and they went above and beyond what I could have ever hoped for!
Meet Coconut. I caved in and surprised Marielle with a 9 week old Maltese puppy. Isn’t she adorable? Marielle had been harassing me, but her transplant doctors said she had to wait until 6 months post kidney transplant. Ok, so I jumped the gun and got the puppy a mere 3 weeks early.
My friend, Jennifer (Jaybird Designs) sent Coconut the cutest collar and sweater. Love them! Thanks so much Jennifer!
In addition to her new puppy, we also got Marielle a cute zebra dog carrier. Oh and the other big gift — a spa day for her and 5 of her bestest friends at Pilo Arts. Marielle and friends will enjoy facials, body massages, body scrubs, pedicures and manicures in 2 weeks from now!
For a week, my home smelled like a florist! Marielle’s aunts and grandparents showered her with flowers and other great gifts for her birthday.
Mother’s Day Miracle
My friend, Tara, celebrated her 1st Mother’s Day this year. And boy, did she get the best present ever. Her son, Colton, received a liver transplant that day! What more could any mother want more than the health of their children?! Wishing Colton a lifetime of health and happiness!
You look back on who you were fifteen years ago and wonder where you found the strength. You see the mistakes of a young mother and understand the person you have become. In celebration of Marielle’s 15th liver transplant anniversary on St. Patrick’s Day, I thought I’d share the letter I sent to her liver donor’s mom which I wrote 15 years ago…just 9 months after Marielle’s liver transplant.
Published December 1994; Re-edited March 2009.
Dear Special Mom:
I have spent many nights thinking about you and wondering how you are doing. I was told that your daughter was a year old and that she had neurological problems. The transplant coordinator told me your daughter had a severe stroke which left your little angel with no brain function. I do know know if this information is true. I do know that you made a decision to donate her liver and give my daughter a second chance at life. I will be forever grateful of your decision to let her live on in my daughter. Here is our story:
Please Don’t Take My Sunshine Away
I have put off telling our story because it brings up a lot of pain and other unwelcome emotions. Those I thought were in our corner have disappointed us, while those who we never expected to, came through like never before. I used to wonder why we were chosen to face the impossible, but now am comforted with the answers I have found.
Our story begins on a rainy Friday morning in June of 1993. My husband, Ron, was present for the birth of our daughter, Marielle Lynnaire, by caesarean section. Marielle was put in a high risk nursery for a week, because of my pre-existing condition (Lupus). Shortly thereafter, she was given a clean bill of health and we brought our little sunshine girl home.
I look back and think how comical it was feeding Marielle a 6-ounce bottle every hour or so and changing more than 2 dozen diapers a day. My friends remarked, “You wanted a baby,” as if this was normal. I complained to her pediatrician on numerous occasions, but was treated like a nervous “new mom”. At one point I asked him why her stomach was so large. He remarked, “All babies have big stomachs.”
At 10 weeks old, we christened Marielle. She was dressed in a bright white gown which made her complexion appear almost green. Within the next 24 hours, when she developed a bad cough, I took her to our local hospital where she was examined by an intern. He indicated that she indeed had a slight respiratory infection, but was more concerned with her severe jaundice. The intern ordered blood tests and insisted Marielle be admitted immediately. All the doctors were undecided about her diagnosis, but mentioned that in the worst case, she could have biliary atresia. I knew, at that moment, it would be bad news. You see, when Marielle was born with all of her limbs, I was so relieved, because I thought that my Lupus would deform her (although my doctor assured me it wouldn’t). My worst fears were now becoming real.
After 9 days in our local hospital, I transferred Marielle to a children’s hospital in Pennsylvania where I heard a doctor had recently split a pair of Siamese twins who shared a liver. I was determined to get her the best care, no matter what, and this seemed like a good start. Once there, a Kasai procedure was performed and we learned the devastating truth about biliary atresia. Our surgeon told me to take one thing at a time, but I knew that I had to start planning for her transplant. We went home for a few days only to return to the hospital because of fevers.
Marielle had developed ascites 2 weeks after her Kasai procedure. No one would tell me, but I knew that it was the beginning of the end. Marielle would spend most of the next 4 months at the children’s hospital. She had developed an infection in her liver which proved to be resistant to the strongest antibiotics. Our doctors agreed that a transplant might be the only way to rid her of this infection. In desperation, we flew Marielle to a mid-west hospital for a possible living-related transplant (they had done the first living-related liver transplant in the U.S.). Miraculously, her infection cleared en route to Chicago. Needless to say, we looked like fools. The doctors thought we were being a bit premature and suggested that we return in the Fall. They asked us to stay in the area so that they could provide a safety net, so we rented a furnished apartment (our hotel had no heat or hot water). At 35 degrees below zero, with a wind chill factor of 75 degrees below zero, it was the coldest winter in 14 years.
A week later, Marielle developed bleeding varices. The attending doctor told me that there was nothing they could do unless Marielle experienced severe bleeding. This puzzled me, so I contacted all of our doctors back on the east coast. They advised me to bring her to the Chicago ER immediately. I rushed her there where the ER team attempted to draw blood with no success. They tried to draw blood from her broviac in her chest. Again, more failed attempts. They contacted the GI doctor on call. I was told that he would be to see us right away. Hours passed and no GI doctor. Finally, after 7 hours of waiting in the ER, I was told that the GI doctor was not in the hospital and would not see Marielle until the next day. My baby was screaming like never before. I had requested her special baby formula and a feeding pump. After 5 hours, the formula arrived, but there was no pump available. It was now 17 hours that Marielle had been without food. Knowing this and that a GI doctor would not see her, I knew I had to do something.
At this point, I made the decision (against the ER doctor’s advice) to disconnect the broviac line and book a flight back to Pennsylvania. Once back at the apartment in Chicago, the phone calls began. The Chicago GI doctor on call apologized for the misunderstanding of hospital policies. He felt that Marielle was not in danger, but he would have a bed ready for her (so that we would not have to go to the ER again) if anything was to change.
Later that evening, Marielle vomited her feeding tube. I immediately contacted the Chicago GI doctor and brought her back to the hospital. The next morning, my social worker (with whom I had only met once, briefly) informed me that she would be filing charges against me for removing Marielle from the hospital the prior evening. I knew that I needed to leave, because we could no longer work together. The next morning I was investigated by the state’s department of children’s services. The state workers seemed to be puzzled why accusations of medical neglect were filed since I had flown half-way across the country to save my daughter’s life. An assessment of my parenting skills was made and my choice for private home nursing for my daughter was made known (they frowned on that–instead wanted the mother to handle all care). I was labeled as “difficult,” because I wanted to see blood test results and review doctor’s notes. I was surprised to find that no other parents had requested this kind of information.
As soon as possible, we were back in Pennsylvania where Marielle was evaluated for cadaver transplantation. We returned home only to have her re-hospitalized. We were only back home 3 days when I received a beep on my pager. I joked with my nurse that it could only be one of two people; the pager company, because my husband forgot to pay my $12 monthly service fee, or our transplant coordinator. I looked down at the number and began to scream with joy. I could not dial the telephone fast enough. Our coordinator was calm and apologized for not seeing us during Marielle’s recent hospitalization. She said she wanted to make sure Marielle was doing well and that she was without fever. I assured her everything was fine and that I thought that a liver had become available when I received her beep. Our coordinator then told me that indeed a donor liver had been found for Marielle. I started to cry…I was just so happy.
We arrived at the hospital late that evening and said our prayers. Thoughts of losing Marielle became real for our family. This might be the last time we put our baby to sleep. The next morning was St. Patrick’s Day (March 17, 1994). It seemed like the perfect day. See, Marielle was named after her paternal Italian grandmother, Mary. The meaning of Marielle in Italian is Little Mary. We always joked that Marielle was green, because of her Irish decent on my side of the family. It was now the luck of the Irish that would help Marielle come through her transplant with flying colors. When our surgeon (who now practices law) removed her old liver, our coordinator brought my husband and me into a room to view the organ. There was not a pink spot on it. It was large and dark green with spots of black. Surely, no one expected her old liver to look this bad. During the surgery, all I could think about was the other mother…the mother who made the decision that her child should not die in vain…that another child could be saved with the gift of organ donation. To this day, I pray for this special mother.
While waiting for progress reports, we visited the gift shop where I came upon a funny looking blue stuffed elephant. I pulled his trunk and the melody, “You Are My Sunshine” played. This was the song I had sung to my daughter since she was born. I bought the elephant to comfort her when she returned from the operating room. This silly elephant was a sign for me that everything would be okay. Marielle’s transplant lasted only 6 hours. She did extremely well. Marielle’s maternal Irish grandmother even joked that all of her friends were calling my daughter , “Marielle O’Carroccio.”
A few hours later, we were allowed to see her in the ICU. No one could have prepared me for the post-transplant days; the tubes and machines were overwhelming. I remember my father counting more than 17 tubes, IVs and other connections. Marielle tried to cry, but the artificial airway that was placed in her throat prevented us from being able to hear her. To hold her proved to be too painful for Marielle. My husband and I felt so helpless. A few days later, she was moved to the post-transplant unit where she went into rejection on the 7th day after receiving her new liver. The surgeon was waiting for me when I arrived at her room that evening. Her liver had clotted off and emergency surgery was performed in hopes of saving the graft. I had thought that we were on safe ground when the rug was pulled from underneath us. I didn’t know how much more Marielle could endure, but corrective surgery for portal vein thrombosis was successfully performed. A week or so later she had a mild bout of rejection and was treated with IV steroids. All seemed to be going well until the doctors became concerned with Marielle’s poor weight gain. It would be another month or so before this problem was resolved.
Finally, on May 17th, 1994, exactly 2 months after her transplant, we began our trip home. My husband took Marielle in our car and I drove my father’s truck with all of our belongings. We were no more than 20 minutes from home when another driver hit my rear tire. This caused the truck to spin around and flip over more than 6 times. I knew I was going to be all right. I knew God would not take me away from Marielle. He knew that only I could give her the care she needed. It was my seat belt that saved my life, but I still spent a week in a trauma unit, because I sustained broken ribs, a fractured sternum, a punctured lung, and numerous other injuries. I was lucky to be alive.
Now, it is 8 months later and I know that I have been blessed. It is for this reason that I have dedicated myself to helping others in their journey. I now know why my husband and I were picked to be Marielle’s parents.
This Christmas will be a very special one. Our family is together again. Our journey has brought all of our family closer. May you all have a special holiday season and healthy New Year.
(Note: Names and places were omitted in original letter to donor’s mom to respect anonymity.)
(Side Note: Notice pacifiers in many of the photos? Marielle could have done that TV commercial where the mom is driving and the child drops the pacifier, so mom has to pull off the road to find it in the car to calm child…LOL! She would have two pacifiers clipped to her shirt, a pacifier in each hand and another in her mouth. Seriously.)
A Week of Celebration
Originally we were hoping to have one of our big shindig with 200 people to celebrate Marielle’s 15th liver transplant anniversary. But the truth is I just couldn’t get such a large party together in such a short time (our annual BBQ this Summer will have to suffice). Anyway, we did celebrate by dining at Trattoria Romana. I know–we spent St. Patrick’s Day at an Italian restaurant…LOL! But it was where Marielle wanted to go, so we did.
And since it’s all about friends when your 15 years old, Marielle and her crew got taken by limousine to The Palm in NYC tonight.
Luckily our dear friend, Albino, will keep an eye on the girls so they don’t get into any trouble.
And then they’ll continue the party tomorrow as all the girls are sleeping over. Guess I’ll be getting lots of Hotcakes and Sausage from McDonald’s in the A.M.
I’m feeling pity for the unfortunate limo driver who has to deal with all the girl chatter tonight. Hope he brought earplugs with him!
There’s always a reason why it happened. You never never did anything wrong.
But it It just seemed to fall apart. You’re taking it all too hard.
Mr. Diva™ did the right thing for Valentine’s Day (even though they were delivered a day late).
He surprised Marielle with beautiful flowers, too!
Yes, I’ve been busy. Busy doing NOTHING. Seriously. Ever since I returned from Marielle’s kidney transplant hospitalization, I am useless. My life as I knew it has been sucked out of me. I rarely return phone calls and emails. I am numb. Not particularly sad, but not giggling as usual.
Friends think I’m suffering from Post-Traumatic Stress Disorder or something along those lines. I don’t think that’s the case. It’s more like I disappeared for a few months and the world kept moving. Now I need to catch up with all that has been neglected since my daughter got sick last May. Only problem is I don’t know where to start. Perhaps it’s all just too much pressure I put on myself.
To add to all this, the CPSIA has been a bad dream for me. This post from Polkadot Patch Kids really sums up my feelings lately. I’ve got a lot to say about the CPSIA, but don’t have the energy at this very moment to post it. Stay tuned.
So I’m taking baby steps. It’s all I can do at this point.
Speaking of babies, my dear friend, Diana (you know, the one who made all the delicious caramels apples for the big BBQ) has a baby shower a few weeks ago. As I had no motivation to sew/embroider baby gifts, I took her shopping at our local children’s boutique instead. We got lots of beautiful baby clothes and accessories.
Notice the heelarioius heels? Oh and I’m delighted to announce the arrival of Sophia Antoinella Diaco this past Tuesday! She’s beyond precious! Congratulations to Diana and Anthony!
I’m preparing to redecorate Marielle’s room in zebra and hot pink. Her bedroom walls will be painted hot pink and I thought one of these neat Vinyl Dress Form on Etsy would be perfect. I was going to add a decorative dress form, but I didn’t want to add to the clutter in her room. That child has too much stuff!
There’s also this Vinyl Dress Form on Etsy
and this one
oh wait…what about this one? So many choices!
OMG! Check out this Zebra Lamp! I love it, but it’s more than I want to spend. Anyway it’s light pink, not hot pink…LOL!
I bought her this bedding and had custom zebra window cushions made for her room. It’s going to be awesome if I ever start painting her walls.
In an effort to get back to my sewing machines (which haven’t been touched in ages), I volunteered to help my non-sewing friend, Lynn, make a table skirt. It took me several days as I’d only do one step and then get distracted with other stuff. Silly me…it is something I’d usually finish in less than an hour. If only I could focus.
If only Lynn knew how necessary this project was for me. It forced me to do what I love most…sew!
And now onto the most important thing…Marielle continues to do GREAT after her kidney transplant two months ago!
You’d never know she is the same child who was clinging to life in an ICU for months! Miracles do happen!
Oh and check out my new favorite song by The Fray!
I am mentally EXHAUSTED from all the CPSIA, but I keep chugging along. Here’s some more links on the subject.
Wondering with February 10th fast approaching, what will happen. My guess is nothing. Still, I’m holding out for something to change. Maybe they’ll allow component testing. Crossing fingers.
P.S. – My daughter, Marielle, will celebrate ONE MONTH post-kidney transplant tomorrow! She’s doing TERRIFIC! She’ll be going back to school in about 2 weeks (she hasn’t been there since last May)! Yippee! Thanks for all your prayers and support!
Somehow I forgot to post this the day after Christmas (guess I was just a tad distracted, you think?)
December 26, 2008
Christmas was so different this year. I’m so glad it’s over. Usually all the holiday ceramics I made years ago bring me joy.
I went through the motions. Never finished shopping or decorating. Didn’t really cared that my presents were without handmade bows and calligraphy gift tags. Or that I didn’t buy all the gifts I had set out to purchase.
The tree had stood undecorated for two weeks until my daughter decorated it on Christmas Eve.
Christmas decorations were place randomly around the house hoping to add Christmas cheer.
My heart was breaking each and every minute of the day.
There were no gifts under the tree until Christmas morning, because I waited until last minute to wrap them.
All I would think about was if a Christmas Miracle (a new kidney) would come in time…
Would my prayers be answered before it was too late?
Although I did not feel hopeless, the reality of Marielle’s health became more than I could bear…
But I kept it to myself. I didn’t want to make my loved ones worry anymore than they already were.
I forced myself to keep conversation light and smile so everyone would continue to think I was strong…
The stockings were hung haphazardly on the stairs…
Never did put a single Pink Christmas Light on the outside of the house. I did, however, manage to put my 2 foot angels in the front window…
I did get Marielle an embroidered stocking to match her Pink and Zebra bedroom…
And she got my Pink Christmas Tree which was “supposed” to go in my Pink Sewing Room. The things us mothers sacrifice for our children…LOL.
Hope everyone has a wonderful holiday! Perhaps next Christmas will be brighter for me.
(Kidney Toy available from Tracy Beans)
Marielle and I returned home late yesterday afternoon from Philadelphia–just two weeks after her successful kidney transplant! Woo hoo!
It is great to be home, but the reality of what’s ahead is daunting:
Overwhelmed is an understatement. Seriously. So please be patient with me while I dig out from under all this insanity…
oh and did I mention my home is TRASHED! Thanks Mr. Diva…great job. Not.
I’ve been missing. I can explain. I woke up in the middle of the night with pain in my abdomen. Made it half-way across the street to the U of Penn Emergency Room before passing out. Hours later the doctors tell me I have TWO KIDNEY STONES!!! No way! How can that be?
Mr. Diva has suffered from severe kidney stones for years and Little Miss Sunshine just got a new kidney. I think between the two of them, I caught kidney sickness. Just saying.
Marielle continues to do great after receiving her new kidney last week. She still has a lot of pain, but she’s a trooper and finds things to distract herself…
and yes, she’s the Queen of the Craft Room…making everything from crepe paper flowers
to cool cut-out thingies…LOL
And yes, of course there’s a bow on her door…
oh and check out what Lady M sent her…
a Little Miss Sunshine necklace (thanks Myrinda)!
Miss Marielle is finally out of ICU. We are hoping to return home to NY early next week. Doctors are just adjusting medication doses so she’ll have a smooth transition. Can’t wait to be back in NY!
Today was the first day post-kidney transplant. I would be lying to you if I told you it went smoothly. Besides Marielle sharing our family secrets with random medical professionals, she struggled with lots of pain and anxiety.
Marielle is so confused due to medications, they she hasn’t fully realized that she has a new kidney. She thinks we are trying to trick her. Little does she know that not only did she get a new kidney, doctors had to remove both of her old kidneys (they were causing her high blood pressure) and do a bowel resection (prior liver transplant adhesions complicated access for the new kidney).
When she does believe us that she got her new kidney, she looks down at her stomach and becomes so upset. Originally doctors were to make a small incision on her right side. Instead, because of the complications, doctors had to do a very large incision from the bottom of her chest to her groin. It was not what we had wanted, but it was necessary to save her life.
The next few days will continue to be touch and go. Her kidney function is perfect. It’s just managing all the medications, their side effects and the ongoing threat of organ rejection.
Please continue to keep my Sunshine Girl in your prayers. But please, say a special prayer for the family who donated their child’s kidney to save my daughter’s life. I will be forever grateful that this amazing family was able to make the decision in spite of their grief.
Yep! But it wasn’t NY Presbyterian who called. It was Children’s Hospital of Philadelphia who called just minutes ago to tell us they have a perfect match for my daughter, Marielle! Surgery is at 3AM!
Please continue to keep my Sunshine Girl in your prayers!
UPDATE: Marielle was taken into the operating room around 6:30AM EST. The surgery can take anywhere from 6 to 10 hours. Will update as soon as I hear anything. Thanks for your continued prayers and support! P.S. – Happy Birthday to my sister, Delia and brother, Joe! LC
EVENING UPDATE: Oh–things could not be going better! Marielle came through her kidney transplant and is doing GREAT. Surgeons removed both of her diseased kidneys and gave her a healthy young kidney in their place. Everyone is thrilled! She woke up and the first thing she said was, “When school ends, I’d like my lobster tail.” ROTFL…that’s my girl!
I can’t tell you all how you’ve carried me when I was scared and unsure. I keep thinking that it’s all a dream. It feels so surreal–to finally reach the other side and preapre to start our new life. Thank you.
Things will be critical over the next few days as we see how she responds to her new kidney. I’ve been through transplant before and remember all too well the ups and downs we’ll be through. But that’s ok…we’ll stay strong and keep at it.
I’ll update everyone after a good night’s rest (I’ve only been up about 40 hours now). LC