Five Weeks Old

Before Caelin was born we had expected him to be in the hospital for four to five weeks. Today he turned five weeks old so he is going on his sixth week in the hospital with no "Going home date" to speak of.

The main thing that is keeping Caelin here is his struggle with feeding. The doctors cannot understand why he is retching and vomiting with the ND tube at 16 mL/hr and higher. So he has remained on 16 mL/ hr for three days now. He is getting to the point where he no longer will take his medications by mouth or even practice oral feeding with breast milk. Thank goodness he still likes his binky because it helps soothe and comfort him. We still have not been informed of the results of the protein intolerance test but we are assuming if it came back positive then they would have switched the breast milk to formula. This afternoon he received an abdominal ultrasound to look for Pyloric Stenosis, a narrowing of the pylorus (the opening from the stomach to the small intestine). If he has Pyloric Stenosis, he will have to have surgery to correct it. We have not yet received any update on the results of the ultrasound.

Tomorrow (Friday) morning Caelin is going into the operating room at 7:30 AM to receive a bronchoscopy. This morning the head intensivist assessed Caelin and decided to schedule him for a bronch because of his stridor (squeaky breathing). He will have to receive anesthesia for this procedure and may have to be intubated because of resulting swelling. We are really hoping this is not the case because we do not want him to be intubated again; but if he has to, then he has to.

Yesterday the doctors took him off his Lasix (diuretic) to keep his body from dehydrating. The past few days his heart rate has been a bit elevated and they attribute it to his body needing more fluid. This would make sense because he has been vomiting all his saliva, sweating a lot- particularly , and having a lot of stools. Yesterday he had eleven stools total... so needless to say, he has developed a diaper rash. Because he was having such explosive poops we put him in size one diapers from newborn and it helped to loosen his cord! So at almost five weeks old, it finally fell out!

This journey that he is on has so many ups and downs. Watching our son have to go through an abundance of physical pain, tests, and procedures is the hardest thing we have ever experienced. Having such a lack of control makes it worse. We are thankful he won't remember anything he is going through in the first months of his life but right now he feels the pain- we can hear it in his cry and we can see it in his eyes. We would give anything to heal our son.

Please keep sending positive energy and prayers for our son to heal so he can come home.