Monday, March 12, 2012
Stronger by the day!
Brooklynn is just about 15 months old and a lot has happened in the last few weeks. I am so excited to say that she has started to army crawl and pull up to standing from a sitting position. I know these seem like simple miles stones but for this special needs mommy it's huge. Day after day I try to be positive and try to remember "it could be worse" but it's the one or two comments that break me down. I heard last week, "We just can't meet her needs, sorry" when I was trying to find a program for Brooklynn to attend. As I sat in the chair of this stranger's office my eyes filled with tears and politely said ok, thank you. I got to my car and cried every tear in me and thought "this isn't fair". We have spent hours after hours in different therapies just to get to this point. I spend more time with therapists and doctors than I do with my friends and still I question if I am doing enough for her. Then there is this face of "Mommy, look. I did it!" Things do get tough but this little girl is a true blessing in our lives. Sometimes I forget and she is my reminder that "it could be worse".
We go to the cardiologist on Friday and we are hoping for a great report. We will repeat x-rays and an echo of the heart to check blood in her lungs and to see if the last hole closed. I have a feeling this is going to be a good appointment. However, our princess has decided that no one can touch her besides her daddy and mommy so there might be a few tears on her part through these procedures. She picked up this habit just in time for her sister's arrival in 3 weeks. I think we may have our hands full!
Tuesday, December 13, 2011
Happy Birthday Brooklynn
This time last year we were preparing to bring Brooklynn into our world. After a pretty easy 9 months, well I guess 10, we were ready! We had our favorite pizza, checked our bags, talked about all the things we were going to do with our little girl. After Brooklynn arrived I could not wait to get my hands on her. Right before I was able to see her the dreams and hopes I had were taken from me in a matter of seconds. It was suppose to be the happiest day of my life and it was turning into a nightmare. That is what I thought a year ago. Today....
I think "how could I have ever thought that!" Brooklynn is a miracle and the love of my life. We may not have been able to do all the things we talked about doing with our little girl but we are doing things we never talked about. She has had her challenges and scares from her surgery but she is happy. Not just a little happy but a whole lot of happy. I have taught Brooklynn many things. She can roll, sit, kind of crawl backwards, and the most important say mama! More importantly she has taught me so much more. I have learned the meaning of kindness, love and friendship in a way I never knew before. Tonight, while she was in her crib, I told her I love you and I closed her door and listened to her babble and fall asleep. I smiled and wiped a tear. I did not bring Brooklynn into our world she has brought me into hers.
Tomorrow is Brooklynn's day!
I think "how could I have ever thought that!" Brooklynn is a miracle and the love of my life. We may not have been able to do all the things we talked about doing with our little girl but we are doing things we never talked about. She has had her challenges and scares from her surgery but she is happy. Not just a little happy but a whole lot of happy. I have taught Brooklynn many things. She can roll, sit, kind of crawl backwards, and the most important say mama! More importantly she has taught me so much more. I have learned the meaning of kindness, love and friendship in a way I never knew before. Tonight, while she was in her crib, I told her I love you and I closed her door and listened to her babble and fall asleep. I smiled and wiped a tear. I did not bring Brooklynn into our world she has brought me into hers.
Tomorrow is Brooklynn's day!
Wednesday, October 5, 2011
Tomorrow will be 6 months since I handed my beautiful, fragile, vulnerable baby over to strangers in scrubs. There is nothing fragile or vulnerable about Brooklynn anymore. She is a strong, spunky, spirited, happy little girl. I think about the future of my little girl every day. I see things so differently then I could have ever imagined. Brooklynn has gone through more in her 9 months than most adults ever will. While we have had to increase her meds I still have hope that the last hole will close on its own. Tommy and I are thankful everyday for what is given to us.
Saturday, October 1, 2011
It's been awhile!
Things have been so busy but here is a quick update.
Brooklynn 9 month check up- 14.9 lbs 27 inches. We are still working on sitting and crawling. She is very close to sitting. She has started Mother's day out at St. Judes and really likes to watch the other kids. We met with the cardiologist in Houston and we had to increase her heart medicine which was a little disappointing. Another update will follow soon.
Tuesday, August 2, 2011
Some good news!!!
"Hypothyroidism-This is the state of not making enough thyroid hormone, and is the most common thyroid problem associated with DS. This can be present at birth (congenital) or may occur at any age (acquired). Every state in the US and many other countries routine screen all newborns for hypothyroidism. In newborns and infants with DS, the most common reason for hypothyroidism is that the thyroid did not form correctly in the fetus. In acquired hypothyroidism, the most common reasons in toddlers and older children with DS is (1) autoimmunity (where the body makes antibodies against its own thyroid) and (2) thyroiditis, where the thyroid tissue becomes replaced with white blood cells and fibrous tissue (Hashimoto thyroiditis)
The symptoms of low thyroid hormone are difficult to pick up, especially in infants. They include decreased growth, decreased development, an enlarged tongue, decreased muscle tone, dry skin and constipation -- all of which might be expected in an infant with DS. So, it is recommended that all infants with DS be checked at birth, 6 months of age, 1 year of age, and once a year thereafter for thyroid function, regardless of their growth."
Brooklynn's thyroid test came back normal!! And we continue pray for progress and good health.
Monday, July 25, 2011
Wednesday, June 15, 2011
Failure to thrive
10 weeks ago Brooklynn's charts read "failure to thrive". She was eating just enough to stay alive and had open heart surgery at 3 months old and 8 lbs. Dr. Mckenzie patched two large holes, constructed 2 valves from one common valve and repaired a ventricle. Now she is happy and healthy eating so much that she is off the high calorie formula weighing 11 lbs. I watch her roll to get places, push up, smile, laugh and eat. I couldn't even imagine these things 10 weeks ago when she lay helpless with tube and cords coming out of her and on her. After going to TCH yesterday her Dr. was very pleased with her progress. We are down to two medications twice a day now. Brooklynn had an echo and x-rays done and they showed minimum leakage. I thank God for answering my prayers, and all this time I thought he wasn't listening. She belongs with me. We belong together. She belongs to life.
3 months
6 months
3 months
6 months
Thursday, May 5, 2011
She will.
Each morning, when I wake, I recognize my powerlessness over our situation at hand. I turn this problem over to God and begin my day. Today at our follow up visit with Dr. Saphire he said "If it were not for this scar, you would have never know anything was ever wrong with her". And today I feel powerful. Today the "what if's" are gone and they have turned into "she will's". Brooklynn is about 4 1/2 months old, 10lbs 1oz and 23 inches long. In four weeks she has almost gained 2 lbs. Her Dr. was hoping for a bigger gain but we take what we can get. Her x-rays looked great and her color is now more pink than pale. Brooklynn talked to her Dr., in her own language, the entire time he examined her. It was quite a sight. We have at least 2 more weeks of extreme precautions. No lifting from the arms, no tummy time, no going out. I am ok with this because I get to keep her all to myself and snuggle. We will go back in a month for another check up. I have had to learn to keep in touch with reality and to remember that time is on my side.
Thursday, April 28, 2011
Time to catch up
We have been home from the hospital now for 2 weeks. Our stay there is one I never want to do again. Surgery went well and quick. There were three other families there with their children having surgery and I formed a bond with these people just through looks. These people who I had never meet knew exactly how I felt. There is a special waiting area for families going through our situation. You watched as they got updates on their children and sometimes it was smiles and other times it was tears. These were the same updates we got with Brooklynn, some good and some not so good. Our biggest scare was the night after surgery in the the ICU. She was given 2 doses of pain medication and was unable to breath on her own. Tommy and I sat there as we watch her vitals drop rapidly. I cried as I watched thinking how I hadn't been able to hold her and touch her in two days. The Dr.'s and nurses helped her to where she began to breath on her own. We spent 5 nights in the ICU and then were moved to a room. The first night was one of the hardest. She cried for 3 hours. She was given Tylenol for pain and it wasn't working. She went from being on IV's for pain to oral Tylenol. I asked that the Dr. come and look at her. He then asked me what I thought was wrong with her and I lost it. I explained to him that I am not a doctor and I wanted to know what he thought was wrong her. It was not a pretty situation for anyone. She finally fell asleep. She next morning she was hoarse from all the crying. We spent another 2 nights as they slowly weaned her off oxygen. Eight days after surgery we were on our way home. Yes home. The first few days were rough. They told us she has reflux and is on the max dose. This they thought was the cause of long periods of crying. As each day passes things have improved. She has started to smile, giggle, and almost roll from back to tummy. She has also found her toes, it's so cute. She has also moved to her own room and is sleeping in her crib. I can't believe it! We go back to Houston Thursday and we hope everything will continue to look better. Her last x-ray didn't look awesome but not worse. My praying knees are not weak.
Saturday, April 9, 2011
Scarest time of my life
We arrived at TCH Monday for tests to be done to make sure Brooklynn was healthy. It was not fun to watch my baby cry all morning while she was being poked and squeezed. Everything came back normal and we were admitted to the 15th floor. She was able to eat until midnight and then fluids would begin in order to prepare for surgery at 7:00 am the following morning. I woke up at 5:00am filled with many mixed emotions....happy, sad, scared, relieved. 7:00 am came and went. 7:15 am the PA for Dr. McKenzie came in to tell us the surgery had been canceled due to an emergency earlier that morning. It was rescheduled for Wednesday, the following day, at 7:00 am. I was devastated. I cried. She was taken off of fluids and was able to eat. She was a very happy baby all day. That night at midnight she was again placed on fluids. I do not sleep this night. At 6:45 am I went out to the nurses station to ask if they had called for her. She had not heard anything. 7:00 am came and went. 7:15 I went out again and nothing. 7:30 an OR nurse came to get us! We went to a holding room where all her vitals were checked and went over a few more details of the procedure. Then it was time to hand my baby's life over to a complete stranger. Brooklynn was looking straight into my eyes and I told her I loved her, to be strong, and that I would see her soon. They took her out of my arms and I felt like a piece of me was ripped out of my body. We then went to the waiting room. The PA gave hourly updates and things were going well. At 2:30 surgery was over. We would have to wait an hour and then we could go see her. When we were able to go see her she looked so much better then what I was expecting. She was resting comfortably as she would for the next day. Over the next 24 hours she was improving so well we hoped to be out of ICU by Friday. Thursday night however took an awful turn for the worst. She was very agitated and was given a new sedative to calm her. After about 30 minutes her saturated oxygen level dropped from 100 to 60 in a matter of seconds and her heart rate went from 110 t0 170. By the time the nurse went to call the Dr. her levels returned to normal. However, about 5 minutes later the same thing happened but they didn't come back up. A team of Dr.s and staff came rushing into the room. My heart fell into my stomach and I thought my baby was dying and I haven't held her in 2 days. The Dr's began to breath for her. After about 15 minutes she was stable. Since then the Dr.s have been more aggressive with medicine since she has not been responding the way they would like. We were hoping to be out of CVICU yesterday but now looking at Monday. Tommy was able to hold B today and feed her. I am still too scared with all the wires. But I did rub her back, talk to her, held her hand, and rubbed her head until she fell asleep. She is an angel!
Wednesday, March 30, 2011
I have 4 more days with my angel before she gets her heart fixed! I am trying not to think about it, I get all teary eyed when I do. I am trying to enjoy every moment I have with her. We have been on walks all week. We go for about an hour, it's the only thing lately that seems to sooth her. She has not been wanting to eat and screams, yes screams, when we put the bottle to her mouth. I have never heard her make those noises before. Sometimes she starts screaming for no reason! I am going to give it the rest of today and tomorrow and if things don't improve I am going to take her to the Dr. She doesn't have a fever but I'm thinking maybe her ears are bothering her. I really have no idea! I am crossing my fingers that she is just being stubborn because if she is sick it could delay surgery. Ms. Cheryl came over this morning for a weight check and Brooklynn has gained 2 oz since last week. She is now 8lbs 10oz on her scale. She has been growing in length and is now 22 inches!
Last weekend we were able to meet several families with D.S. babies. Many of the children there also had to have their hearts repaired. I found that to be extremely helpful. We now have an idea of what to expect. I wish that this is still something we didn't have to prepare for but I can't change that. I am so ready to just enjoy my baby with a healthy heart!
Tuesday, March 22, 2011
Today we had our last visit with Dr. Sapire at TCH until after surgery. Our visit was ok, not great, but ok. She has gained an ounce in two weeks. On their scale she is 8lbs 4oz. We were hoping for a bigger gain but it's not backwards. Brooklynn just feels so heavy these last few days. She had another set of chest x-rays done and they looked good. The medicine is limiting the amount of blood that is going into her lungs. The good news is that she is stable and healthy for surgery. She will be admitted April 4th and the surgery is April 5th. I originally thought the surgery lasted 8-9 hours but if there are not any complications it could be 4-5 hours. That was a big relief for me. Two weeks from today will be her "heart day" which I know we will get to celebrate every year! I just wanted to thank all my family and friends for your support. I am so overwhelmed by the love I feel from others. Here is a 3 month picture taken by our dear friend Heather!
Wednesday, March 16, 2011
Brooklynn will get her heart fixed April 5th, she will be admitted April 4th. I have jumped up and down with joy and have fallen to the floor and cried with fear. Emotional rollercoaster. I spoke with the nurse this morning and the ICU is booked. They have moved other surgeries around to make room for her. I have dealt with denial, that this could not be happening to me, my child, or my family. It lead to anger from the feelings of grief and inexplicable loss that I didn't know how to explain or deal with. Now I am powerless. I can not change what is happening and it is very difficult to accept. It is extremely hard to be forced to rely on the judgments, opinions and recommendations of others. Even though it does not seem possible, good things will happen each day. I am still mad at God but now asking that he doesn't take her from me now. That would just be mean.
We had an awesome week so far. We had a great visit with Adam, Beth , Laura and Ben. The boys got to go play golf while us girls girls had Brooklynn's 3 month pictures. Heather takes the most amazing pictures! Then we had Tommy's brother Billy and his family come. We had a blast playing with Max, Olivia and Georgia! Tommy heated up the pool to 95! Here on some pics!
Thursday, March 10, 2011
We have made it home from TCH. We met with the surgeon, Dr. McKenzie. He seemed very knowledgeable. He went over every last detail. He explained everything they plan to focus on once they open her chest. They will go through the breast bone. After surgery, she will be in ICU for 4-5 nights and then moved to a "normal" room for another 4-5 nights if everything goes as planned. One major complication, which he said was very uncommon, would be that they could put a stitch on a certain area of her heart which would require a pace maker for the rest of her life because it would cause her heart to beat slower than it should. She will need at least one blood transfusion. She is o+. Tommy and I will donate our blood for Brooklynn. We are now waiting for the scheduler to call to set the date. Dr. McKenzie has said the end of March or beginning of April will be the first open time. Once again, we wait.
Sunday, March 6, 2011
We are home at last and we already miss Nana! Brooklynn has grown so much over the last week. She smiles more and has started to grab her toys. She will be 12 weeks Tuesday, I can not believe how fast time has gone. The last couple of days have been rough. She ate 17 oz Thursday, which is the most she has ever eaten, but since is back at 10 oz. She has started to projectile vomit...it can go really far =) She has been sleeping a lot. She eats and gets so tired. Her eyes turn red and she fights the sleep. We go to the cardiologist tomorrow morning. Although I do not think we will learn anything new but hopefully a weight gain. We see her surgeon on Thursday. In his opinion she is ready for surgery since she has not gained a significant amount of weight. She has gained 1/2 lb in 12 weeks. I love her more than anything in the world and if I could take her place and take the pain away I would do it without question.
Wednesday, March 2, 2011
Brooklynn and I are having a great time in Arlington. My mom and dad have really enjoyed having us and it is also nice to have someone take care of me too. We really miss having our families around. Tuesday Brooklynn will be 3 months old! We are ready to get home and see daddy though! I was suppose to wait for a surgeon at Texas Children to call me but I thought I would go ahead and give them a call. My mom always tells me "the squeaky wheel gets the grease". With that being said Brooklynn will have her 1st consultation next Thursday with Dr. McKenzie. I am so excited but I find that the tears build up. They are both happy and sad tears. I have to enjoy every moment and just take one day at a time. Things could be a lot worse.
Monday, February 28, 2011
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.
Thursday, February 24, 2011
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.
Tuesday, February 22, 2011
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!!
Sunday, February 20, 2011
I have shared this with many of you.
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"
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