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.

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.

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s1600/Brooklynn+082.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s320/Brooklynn+082.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850995708409170" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 325px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s1600/Brooklynn+069.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s320/Brooklynn+069.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850990769886658" border="0" /></a> 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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a>

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s1600/Brooklynn+082.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s320/Brooklynn+082.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850995708409170" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 325px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s1600/Brooklynn+069.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s320/Brooklynn+069.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850990769886658" border="0" /></a> 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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a>

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s1600/Brooklynn+082.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-TMg9D6me6TcRWWymNzbrvyd7rB1bpAXHKg7V-Aihs5u2deP_eD5OCjjL4TaQugw82tucXmsBmDn2jlUogYT6ch82O6rtsrIzjbFTKTpWCFvL3IvkE0Bux3UgNxeOvJCacCng4Uvvkvri/s320/Brooklynn+082.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850995708409170" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 325px; height: 244px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a> <a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s1600/Brooklynn+069.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgDWcg4GxXYzFKQjQ1Q9l3buK3xaDSuqFlxSzNU-U2mvRFQHwDj0noR5WlpRdUapKCKZYm4IDXCaHZ8R4tOT-gRUnYsAmadbNVXuP-9u8AuMBDFM5c8WORLxczRJ5dp2cVgEOYnyT4xTrsP/s320/Brooklynn+069.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850990769886658" border="0" /></a> 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. <a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s1600/Brooklynn+077.jpg"><img style="float: left; margin: 0pt 10px 10px 0pt; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgMLxv5Fx8q75cUeK8i189FY01Dnik-b4kJ3KfNxN5OQLlTfJgb_NSxbAhQJ6xA_pr9tIib9EfYUEAFB3d0JZ4OCYMYdgUFXP0QTsSXjjoqAyOuTxPXsJwuhyphenhyphenogi16bH9onUCOHQTiCZWZX/s320/Brooklynn+077.jpg" alt="" id="BLOGGER_PHOTO_ID_5600850992618969714" border="0" /></a>