The board of surgery has accepted Brooklynn's case. I am waiting for one of two surgeons to call. One is the chief of surgery, the other is a very qualified surgeon. There are only four Doctors at Texas Children who can preform this open heart surgery. We will meet before we schedule the surgery to talk about the procedure and risks. After talking to her nurse this afternoon it is still unclear of a timeline. She told me they will be in contact by Thursday. We are now moving forward. I know that the surgery will make her better but it will be the worst day of my life to hand her over. She is the best gift I have ever received.

We made it to Arlington last night. Brooklynn did great in the car. It took a little longer than normal to get here since we stopped and fed her. We also brought Lucy, who did great too, who needed to go for a walk. But we made it! On the drive here I couldn't help but think I needed to call her Dr. at Texas Children back. I am not ok with waiting 2 weeks to see if the oil is going to help her. I can't watch her get worse. I won't let it happen. With all the medications she is on she should be getting better not going backwards. I called this morning with my concerns and that I would like him to take her case to the board of surgery now. They called back this afternoon and he will take her case Monday morning.

We just got home from Texas Children's. Brooklynn lost weight which is a big concern. She is 7lbs 1oz 10 weeks. However, on the bright side the new medication seems to be working, her lungs were less congested than last week after taking new chest x-rays. While we can not add any new meds we are going to try our last two resources. One, adding a MCT oil which will add 3 more calories per ounce into her formula. This will give her 30 calories per ounce. We will try this for 2 weeks. Our last resource is a feeding tube. I don't know how long we would have to try this. I am not a doctor or nurse, I'm a teacher, and having to insert and remove a feeding tube seems really scary to me. The Dr. can not take her case to the board of surgery without trying "everything possible". This did not sit well with me but I don't know what other option we have. He did say if there was something wrong before 2 weeks then to bring her in earlier. Once again, how an I suppose to know if there is something wrong?? I guess I stick with the "mommy feeling". He was pleased with her heart rate and rate of breathing. He did not think she was in any discomfort. Great news, we get her to Dallas tomorrow! Can't wait to show everyone our angel!!

Welcome to Holland

I have shared this with many of you.

Welcome to Holland

WELCOME TO HOLLAND
BY EMILY PERL KINGSLEY
I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that "unique" experience to understand it, to imagine how it would feel. It's like this....
When you're going to have a baby, it's like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The COLISEUM, THE MICHELANGELO-DAVID. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go.
Several hours later, the plane lands. The stewardess comes in and says, "WELCOME TO HOLLAND"! HOLLAND?? you say. "What do you mean Holland"? I signed up for Italy!!
But there's been a change in flight plans. They 've landed in Holland and there you must stay".
"The important thing is that they haven't taken you to a horrible, filthy, disgusting place, full of pestilence, famine and disease. It's just a different place"!
So you must go out and buy new guide books. And you must learn a whole NEW LANGUAGE. And you will meet a whole NEW GROUP OF PEOPLE, you would never have met!
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there a while and catch your breath, you look around, and you begin to notice that Holland has windmills. Holland has tulips. Holland even has REMBRANDTS!!
But everyone you know is busy coming and going from Italy and they're bragging about what a wonderful time they had there and for the rest of your life, you will say, YES, that's where I was supposed to go. That's what I planned! And the PAIN of that will NEVER, EVER, EVER go away, because the loss of the DREAM is a very significant loss. But if you spend your life MOURNING the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about HOLLAND"

While we are not going backwards it sometimes feels that way. Brooklynn is just a little fighter. We went to Texas Children's a little earlier than we had planned. I had that "mommy feeling" that something just wasn't right. After going we found that her heart is very strong. However, the holes in her heart are causing more fluid into her lungs. We are going to add one more medication and if we don't see progress then it is time to talk about surgery sooner than later. She has only gained an ounce in three weeks. She is now 7lbs 4 oz at 9 weeks. It breaks my heart to pieces that I can't "fix" her. We go back to Texas Children Tuesday and I am hoping, like everytime, he will say she is fine. Unfortunately, I always hear what I don't want to hear. The waiting to see what's going to happen is the hardest part. She has brought Tommy and I closer together than I ever thought possible and is our angel.

Here is a story that another mommy like me shared. She also has a little girl that went through they same surgery Brooklynn will have. It just touches my heart and I feel like the "mommy" in the story is me.

The Mommy sat in the waiting room of a cardiologist’s office. She had been a Mommy for less than four days. She carried a soft, delicate, pink bundle that weighed less than six pounds. The bundle, the baby, was the reason the Mommy was at the cardiologist’s office. The baby, so tiny, so delicate, so vulnerable, had a heart that hadn’t been formed properly. It was missing a valve, and it had holes where there shouldn’t be holes. The pretty pink bundle was so serene, though, you’d never know by looking that there was something so devastatingly wrong with her. That there was something so terrifying about her. It may not be obvious to those who looked at her, but that Mommy surely was terrified.

The Mommy looked around the waiting room, and thought, “I’m definitely going to become familiar with this place.” It was not a happy thought.

Finally, the family was called in, and the Mommy took the small, beautiful pink bundle in for her first cardiologist visit. Weigh in. EKG. Exam. A routine that the Mommy and the baby would endure together many, many times in the months ahead. The doctor drew pictures for the Mommy and the Daddy, so that they would know what exactly was wrong with the baby’s tiny heart.

They say that your heart is the size of your fist. The next time you are near a six pound baby, look at her fist. This was the size of the heart that the doctor was talking about to the Mommy and Daddy.

The Mommy kept trying to ask questions. She wanted to know what she had to do to help the baby be strong. The questions kept getting stuck in her throat. She tried to ask the doctor what she could do to keep that tiny, beautiful pink baby from dying. She could not get the words out and cried.

The doctor told the family that the baby would need surgery to repair her tiny heart. She would need this surgery before her first birthday. They needed to help the baby gain weight and be strong. The doctor set a surgery goal–Three months old or 10lbs, whichever came first. The doctor told the family all the symptoms of heart failure and how to watch for them. He told them that most would be evident during feeding time. One of the most strenuous activities a newborn does is eat. If the little baby was in heart failure, the family would surely see it when she was taking a bottle.

The Mommy took the baby home and tried not to cry every moment of every day. She tried not to feel afraid. She tried to sleep. She tried to give the baby her bottle, but it was so scary to the Mommy that she often let the Daddy feed the baby. The Mommy could not enjoy the warm, cuddly, bonding time of feeding a newborn, because she had to be ever vigilant. Was the baby sweating? Was the baby turning blue? Was the baby struggling to breath? The Mommy became obsessed with what the baby ate. She kept a chart to make sure the baby was taking enough calories during the day. She hated to let other people feed the baby, because what if the other person did not know what heart failure symptoms looked like? What if the baby did not take all of her bottle and missed out on precious calories? What if the baby died? What if the Mommy wasn’t a good enough Mommy to protect this beautiful, delicate, vulnerable, pink baby from those destructive holes in her heart?

The Mommy felt that she was the only one who could protect this baby. The Mommy was probably silly to think that, but what else could the Mommy do? This was her baby. Her first baby. Her tiny, delicate, fragile, vulnerable baby. No one seemed to understand this, and the Mommy felt incredibly alone.

People told the Mommy she was overprotective, some lovingly, some critically. The Mommy felt angry at that. The Mommy was just so desperate to keep that tiny, delicate, fragile, beautiful baby alive, to help her grow strong, so that one day soon, the Mommy would be able to hand that tiny, delicate, fragile beautiful baby over to a surgeon, who would cut her chest open.

The knowledge and fear of the baby’s necessary surgery never left the Mommy’s mind. The Mommy never bought clothes too big for the baby, to be stored away for next summer, next spring, next fall, because there could be no plans for “after” the baby’s surgery. There was no life to be considered “after” the baby’s surgery. When the Daddy would say, “We’ll do _______ next summer”, the Mommy would just nod along, thinking only of the surgery. The Mommy dared not to hope that far in advance.

The Mommy would say calming things to others; talk about how skilled the surgeons at the hospital were, how “routine” this surgery has become, how confident she felt in her doctor’s care. The Mommy did not always feel those calming things in her heart. The Mommy just felt scared and alone.

As the days and weeks and months past, the tiny, fragile, vulnerable, pink bundle began to grow and become strong. She mastered the art of taking her bottle. She learned to hold her head up. She smiled, and laughed, and cooed, and babbled. She made everyone fall in love with her. She helped heal the Mommy’s heart, but the Mommy could never stop worrying about the baby’s heart. No matter how happy the Mommy felt playing with the baby, no matter how big and strong the baby was becoming, the Mommy could not forget that someday soon, a surgeon was going to operate on this baby’s tiny, fragile, delicate heart.

The baby passed 10lbs. The baby passed 3 months old. She never turned blue. She only sweated a little bit. She grew strong and happy. At Christmas, when the baby was six months old, the Mommy bought her clothes that would not fit her until spring. The Mommy was finally learning to see an “after”.

The day came. The day the Mommy had feared was finally there. The Mommy felt more hope than she had ever dared to let herself feel, but there was still the hugest fear to face, the hardest challenge to overcome.

The morning of the operation, the baby was not allowed to eat. The morning was interminably long. The baby was hungry, and cried. The Mommy was afraid that if the baby died during the operation, that her last thoughts would be, “Why didn’t Mommy feed me?” This made the Mommy cry more.

The Mommy found herself in a waiting room again. This time when they called the baby’s name, it would not be for an EKG and an exam. It would be to go down to the OR.

They called the baby’s name.

The Mommy and Daddy were able to carry the beautiful, fragile, vulnerable baby to the operating room. The hall was longer than any hallway the Mommy had ever walked down. At the door to the OR, the Mommy and Daddy got to hug and kiss the beautiful baby. They told the baby they loved her. They told her they’d see her soon. They told her to be strong. They told her goodbye.

It has been two years, eight months, and 10 days since the Mommy and Daddy handed their beautiful, fragile, vulnerable baby over to strangers in white scrubs. There is nothing fragile or vulnerable about that baby anymore. There is nothing “baby” about that baby anymore. She is a strong, spunky, spirited, happy little girl. The Mommy thinks about the future of the little girl every day. The Mommy is proud of both of them, for getting past those darkest days.

We have been quite busy the last couple of weeks. We have gone on lots of walks and pretty far! Brooklynn's Papa Roy, Sugiema, and Uncle Billy have all come to visit. She really enjoyed it! Daddy even got to babysit all by himself while I went to shake my tail feather at Zumba with Erin. I just can't move like that anymore....I honesty don't think I ever could. Friday we go to the Dr. for our 2 month shots! I can't believe she is already to months old.