Home | Calendar | Español | Media Room | Shop | Contact Us

Search:

   


Declan


Our little angel was born June 28, 2012, unexpectedly, by emergency C-section five weeks early due to small measurements and lack of amniotic fluid. He was 4 pounds 13 ounces, and 16 inches long. At birth we discovered that he was missing two fingers on his left hand and on his right, two fingers were fused together. As far as I could tell he was perfect, but a very keen Neonatologist in the NICU consulted with a geneticist in his group and through pictures they determined that he had CdLS. While it was a lot to take in at three days old, I am very grateful we found out right away so we could begin therapies and be aware of what to watch for. At two months old while at the GI doctor for severe GERD we were referred for further testing and learned that he had intestinal malrotation that required immediate surgery. During the hospital stay for that they found that he aspirated when swallowing and so is now being fed through a g-tube. We are very hopeful that this is temporary. He is due for several other surgeries in the coming months--one to correct his ptosis, one to separate the fused fingers and a third to correct his hypospadias. While this has all been very overwhelming and sometimes almost unbearable, everytime I hold him or even now as I look at him while writing this, I am amazed by this perfect, wonderful angel God has given us! He has started physical and occupational therapies and will be starting speech soon. Now, at the ripe old age of 14 weeks, I can already tell that he will do great things! His therapists say he is a fighter and so strong! I would encourage anyone with a new diagnosis to seek services early! Early intervention is key! I look forward to the future with a mixture of excitement and fear. The excitement comes because I know he is capable of so much good, and I can't wait to see all the goodness he will continue to bring into this world. The fear is just of the unknown. I just pray that I can show him enough love and instill enough confidence in him to get him through the tough moments. The times when he is made fun of, or told he can't do something will be the hardest, I think. But our family will be there to support him through it! We have been so blessed in this short 14 weeks that we have had Declan- we are lucky to have him in our lives!

Story Bank Home > Story Bank Entry: Declan