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!

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.

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.

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.

some new pics

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

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.