Friday, February 25, 2011

Aliza's Heart

Often as parents of a child with a heart defect we find ourselves waiting for the shoe to drop. We are always wondering if Aliza's heart defect is the cause for this problem or that. When she was 3 weeks old she had her heart defect repaired, however the surgery left her with a valve that does not function properly and may one day need to be repaired. She is on a daily heart medication to lower her blood pressure so that her heart does not pump as forcefully so that the malfunctioning valve does not pump blood as forcefully back into her lungs, causing lung problems and eventually heart failure.

We have always known that one day we will be looking at another heart surgery and we pray that this is years away. As Aliza is getting older, she is almost 9, she is getting smaller...No, she is not shrinking, but she is not growing. She is losing weight, but she still looks very healthy and is very active. Her siblings sure are gaining on her. Aliza is 47 inches tall, and has been for over 1 year, Trevor is 50 inches tall and sprouting fast, and Ella is 46 inches tall (she is a tall 4 year old) So you can understand our concerns that maybe Aliza's heart is not able to keep up with her hence the lack of growth. So yesterday was our visit to our wonderful, amazing, kind, I cant say enough good things about him, Cardiologist Dr. Michael McCulloch at Nemours Cardiac Center. We have checked in with him every 6 months for the past few years. We discussed our concerns with him...He is a dad of two young kids and I really feel he gets it! He does not think we are crazy or paranoid parents, how could you be when you have a child with a HEART defect... We are not talking about a broken limb, we are talking about her heart. There are many things in life we can live without... Aliza can not live without her heart and I can not live without her. And this love I have for her may cause me to worry and make a bigger deal out of some things that may seem trivial to others. I owe a huge thank you to Dr. McCulloch for understanding our love for Aliza and validating our concerns while at the same time easing our fears. According to the "Great Doctor" Aliza looks great! While she has lost weight and not gained height, we have can rest assured that her little ticker is ticking away. We charted her on a Down syndrome growth chart and she is on the same curve she has always been. She has dropped within her curve, but not dramatically. As her peers are shooting up around her she this makes her petite stature so much more evident, but who cares about what is essentially a cosmetic concern. And now we breathe, at least until the next issue...

Wednesday, February 16, 2011

What a Day!



I have been a bit caught up in parenting to think about posting on the blog. Quinn is now almost 7 months old. I am truly cherishing every moment with her. She got her first tooth the other day. I cried! It was so bitter-sweet for me. This was my last "first tooth" moment. She is growing so quickly, I just want to slow life down a bit and keep her an infant forever. She is such a good baby. She laughs and giggles and really enjoys everything that her brother and sister do.

Today was a day that I want to remember, thus the reason I created this blog, so that we would have a journal of our family journey.

This morning, after Tom left for work, Trevor said that his front tooth was loose. I looked at it and told him that I did not think it was ready to come out just yet. He disagreed and insisted that his tooth was on its way out! I told him to take a bit of an apple, which he did without the desired result. I turned around to do something and then look back to him and he is biting on a fork. Are you kidding me, a fork Trevor, I said to him. No, do not bite on a fork. He says I need to get this tooth out. Okay, so bite the apple, which he does again, without a result. Next I see him in the family room punching his mouth with his fist. He is seriously punching himself in the face. This is a child determined to go to school with one less tooth. I told him to wiggle it from side to side. He starts wiggling, biting the apple, punching, wiggling, biting, punching when all of a sudden the tooth goes flying across the room. I am not sure which movement worked, but finally the tooth was out. We all move into the kitchen to celebrate and Aliza says to me, "Mommy, that makes me cry." I looked at her and she was very pale. I kinda giggled to myself because Aliza is a very intense person. When Aliza has a boo-boo it is a big deal. The world must stop and everyone must know that Aliza has a boo-boo, no matter how big or small. She shows her feelings without restraint. Her feelings and emotions are always very close to the surface, no matter what the situation. Aliza gets upset over very small things, for example she does not want anyone to touch anything if their hands are wet, she gets upset if I reach in to the shower to adjust the water because my clothes may get wet, she needs band aids for invisible boo-boos and sometimes cant walk, talk, move when she has a boo-boo. So I guess she was really internalizing Trevors lost tooth and it was making her uncomfortable. She was so uncomfortable that she fainted. I have had many firsts with my children, but I did not think that this would be one of them. Immediately after she told me "that makes me cry" I thought she was looking kind of pale, her eyes were a bit glazed and she was very still. Her gaze drifted toward the right, then I said "Aliza, its okay." She did not have any tears and did not say anything. I was standing at the sink making a glass of warm salt water for Trevor to gargle. I looked back over to her and she lost her balance and fell into the refrigerator and then went down to the floor. I caught her before she hit the floor, it was really in slow motion. She went limp in my arms. I started shaking her and telling her to get up. On one hand I thought it was a bit funny that she was so bothered by Trevors tooth and on the other I was praying that she was okay. It took her a few minutes to really "wake up". She was really out of it for a bit. I helped her to stand up and we both took a deep breath. She sat down, I gave her something to drink, and we began our day. I called Tom, and then her Pediatrician and emailed her Cardiologist. Everyone agreed that this was likely not a seizure, but a response to something that she perceived as gross and this was how her body was dealing with it. Little did she know that I had planned to keep her home from school this morning and take her to get blood drawn for her thyroid and hemoglobin. I started wondering how she was going to handle seeing her own blood.
While we were walking into the hospital to have her test done, she looked at me and said, "Mommy, I am going to be brave. I am not going to cry!" I said "Great Aliza! Do you want to go back by yourself?" thinking of course there was no way that she was going to be able to do this without a huge battle. She said, "Yes mommy, you stay here, I can do this, I am brave!" The technician called her name, she looked at me, stood up and went back with the technician. I said, "should I come with you", she said "no, sit down." Five minutes later, Aliza came back into the waiting room. I stood up and prepared myself for the battle of trying to get her back into the lab area. Then I noticed that she had a sticker in her hand. The technician looked at me and said "she did great!" I was stunned. Aliza said, "I was brave Mommy. I did it all by myself." As I am writing this there are tears streaming down my face. I can not believe that she did it. Of all the times I have had to hold her down, legs wrapped around her little body, someone else holding her arm and someone else holding her head, Aliza screaming and terrified, and I am equally tortured at her perception of to pain that I am a part of inflicting upon her. And today she did it all by herself. No one had to hold her down, she was a big kid. I am not sure which one of us was happier... What makes this day even better is that it started out with her fainting at the idea of her brother losing his tooth, and yet she was so brave and strong when it came time for her to give blood. Next week she is having a tooth extracted... Are we pushing the limits of Braveness???