Jackson, born 2008Jax came into the world quickly on only the second push. He was perfect, 7 lbs, 14 ozs, with big, chubby cheeks. When he was born he was grunting and the doctors and nurses kept saying it was because he came out so quickly and that he still had fluid in his lungs that wasn't squeezed out during his birth. He continued to grunt and a few hours after delivery, a nurse on the Mother Baby floor decided to do a pulse ox and discovered his oxygen level was very low. They rushed Jax to the nurses' station for closer evaluation. When his stats were not improving they moved him to the NICU. Incidentally, the initial reading was wrong, but his numbers were indeed low, just not as low as initially indicated.
They expected him to be in the NICU for just a few hours, but his oxygen saturation levels were not coming up. After a chest x-ray he was diagnosed with TTN, which is basically wet lungs, and was officially admitted to the NICU. They told us his lungs would clear up in 48 hours and that he would most likely be discharged at that time. As the x-ray showed the fluid going down, Jax's stats were still not where they needed to be. He was on and off oxygen support for a few days but even with the extra oxygen his numbers were never right, always just a little off. He had also developed jaundice and was now under photo light therapy.
Finally after being strung along for four days with no answers and no definite guide as to why they were keeping him in the NICU, a nurse heard a heart murmur. An echocardiogram was ordered and he was quickly diagnosed with TAPVR. Within hours he was transferred to Johns Hopkins hospital. At six days old he under went open-heart surgery to repair the defect. He did remarkably well with only a few minor bumps in the road and finally came home six days after surgery, when he was 12 days old.
Upon discharge he immediately began gaining weight and has been doing great ever since. We are keeping a close eye on some mild stenosis that he has along the repair stitch line. At this time it is causing turbulence in the heart, but is having no other side effects. When and if it does cause more problems we would most likely be faced with another open-heart surgery, but at this time he has been holding steady for a few months. My husband and I will never get over the strength and courage that Jax showed during his first few days of life. We are so very blessed to have such a special child and continue to be in awe of this amazing little boy who has brought us so much joy!
Story by Jackson's mom, Nicole - Maryland
Grace, born 2005