Mommy's update on Abigail

So much to say... I'll try to keep it as brief as possible, but lots has happened to our sweet baby girl since her arrival. The first couple of days were pretty uneventful. They started an UVC (umbilical vein catheter) in her belly button to give her medications (prostaglandin E) to keep her PDA open in her heart (keep her blood oxygenated)... She did not require any extra oxygen. Only issues were with her blood sugars the first 24 hours, which quickly resolved, but left her heels all bruised up from being stuck .

Monday April 13th- I was discharged home from hospital. It was so hard to leave her here that evening . She was NICU III.

Tuesday, April 14th- . Today Abigail received an UAC (umbilical arterial catheter). This will measure her blood pressures continuously. They decreased her oral feeds (drinking breast milk by bottle) due to the new catheter. Started her on TPN and Lipids (supplemental nutrition) through UAC.

Wednesday, April 15th- Upon arrival to hospital today I was surprised to learn that they had stuck her, unsuccessfully, 4 times attempting placement of a PICC line (peripheral inserted central cath) in her hand. I was a little irritated walking into that, no warning, no consent needed I guess. But little to my knowledge at that this would be just the 1st of many surprises. Now they say she will need Interventional Radiology to place PICC line.

Thursday, April 16th- She was tenatively scheduled to go for cardiac catherization today sometime after lunch. To my surprise I was awoken at 7 am to tell me they were planning to take her to cath lab asap. So rushing to get to hospital I was then called by 3 MD's trying to obtain consent over the phone to do the procedure. I then hurried to hospital, but they had taken her back for catherization before I arrived. Very upsetting not to see her before a big procedure. She was intubated (breathing tube) for the procedure which lasted about an hour. She was extubated (breathing tube removed) right away. We were later informed of the results: Hypoplastic Right Heart (very small right ventrical) which we knew about ahead of time. Her case is considered very severe. Also, Right Coronary Atresia, and Pulmonary Atresia. The Coronary Atresia is what we were hoping not to hear. They also spoke of possibility of needing a heart transplant. They plan to talk more about her case further with all the cardiac docs and surgeons to discuss further plan of care. They took out her UAC (umbilical aterial line) this afternoon. This was a rough day for us all. Me and Nathan stayed at the Ronald McDonald house that night.

Friday, April 17th- We were up bright and early. She was scheduled for PICC line today at 9 am. They had kept her NPO (nothing to eat by mouth) since midnight before. For second day in a row, she was intubated for her procedure. Interventional Radiology placed PICC line without difficulties. She came back to NICU extubated. We spoke with cardiologist Dr. Price today re: her further care. They plan to do 1st surgery (BT shunt) next week . Will decide further plan of care after then. They were concerned with some yellow secretions noted on end of ET tube (endotracheal tube)..... Now concerned with infection... Labs came back negative for any sign of infection. She did not eat well today. I think they just wear her out with all the different procedures and poking that she gets too tired to eat. Threatening a NG tube (nasogastric tube) to feed her. They stopped her TPN and Lipids today.

Saturday, April 18th- We came into the NICU this morning to find her with an NG(nasogastric) tube in. The nurse said she hadn't eaten very well during the night and was tachypnic (fast breathing). I discovered a bloody stool when I went to change her diaper. This led to the diagnosis of NEC (necrtotizing enterocolitis), bacteria in the intestines. This was not a good addition to the list of her problems. This diagnosis led her to get a new IV in her other arm. She also has been started on antibiotics for the next 10 days, and wont be able to eat for a week. The nurse took out her NG tube and put in another tube down her throat into her stomach that is suctioning everything out. She doesn't like not eating very much. NEC is also going to delay her surgery until it is resolved.But, Were still like to make her look cute, with bows, socks and hats.:)