Tomorrow will be a full week inside the walls of the Cleveland Clinic. So far this experience has been much better than I expected. Up to this point, baby doesn't have Hirschsprung Disease nor any other health complication that we are aware of except for his heart defect, which we were already prepared to deal with.
We were fortunate last night and tonight as well to be allowed to stay in a special room in the NICU called the Transition Room, usually reserved for families to share with their babies the night before they are scheduled to be discharged. I'm not 100% sure why they offered us this room as we had been set to stay at Ronald McDonald after I was discharged, but it doesn't really matter because its been really great to stay overnight with our baby. We've actually been in this room with him since 9:00 AM yesterday and its been a real blessing to have the opportunity to snuggle with him all day and to nurse on demand instead of following the rigid NICU feeding schedule... I'm not sure we could have a baby in the NICU and have a more natural feeling experience.
Tomorrow Luke will have his fourth echocardiogram since birth, with the others occurring this past Saturday, Monday and Wednesday. The reason he's had so many is because his Patent Ductus Arteriosus (PDA) within his heart is still open.
On both Monday and Wednesday, each day revealed that the PDA had shrunk some, but that it was in fact still open. Tomorrow we will be looking for the valve to have shrunk more, ideally it will be completely closed. The PDA as a defect is concerning, but Luke's cardiologists seem more concerned with how the closure will affect the final measurements of the right and left ventricles of his heart, which could necessitate a single ventricle repair versus a dual ventricle repair of his AV Canal. The single versus dual repair would be due to him having a mild imbalance in the sizes of the right and left sides of his heart... If the smaller side is too small to handle the appropriate amount of blood, it will be considered basically useless and the repair will be made incorporating only one side of his heart, known as a single ventricle repair. As of yesterday's echo, our cardiologists continue to believe that a double ventricle will be feasible, so hopefully tomorrow's echo will find the PDA to be closed and will verify our plan of a double ventricle repair.
We are getting geared up tonight to watch about an hour and a half worth of videos covering the topics of carseat safety, infant CPR and back for sleeping. Luke will also be receiving his Hepatitis B and RSV vaccinations tonight. Seems so odd to be giving shots in the evening... Similar to last night, he was circumcised at 9 PM! Life in the NICU is different than anywhere else!
Today I also was a bit concerned that my incision was becoming infected as it was warm to touch, I noticed that the steri strips were wet from some drainage and also the wound underneath appeared to be separating in the middle some. We called down to the SDU to see if one of the doctors would take a look at it and fortunately my doctor had just completed a c-section and was in the unit. He took a look at my incision and validated that it looked okay. With that peace of mind, we returned to the transition room.
Also today, our social worker came in to visit and shared information with us about Help Me Grow and the importance of early intervention. She also obtained prescriptions for Luke for both physical and occupational therapy from our neonatologist.
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