I wanted to do a special post today as we prepare to discharge. We thank you all for the check ins, prayers, meals, snacks, hugs, and love from everywhere.
Procedure Done:
Common AV valve repair and septation
Inlet VSD closure
Primum ASD closure
Repair of systemic venous anomaly
First spot light Holly’s Heart I was introduced to the organization by a fellow heart momma when I was on the search for hospital appropriate PJs. I submitted a request online and within days we had a delivery free of charge. Now these are just any PJs, they allow medical personnel to continue to see all the areas needed while still being clothed. If you find it in your heart check out this organization and support them so they can support families like us.
I also wanted to share a special note about HopeKids we have been a #HopeFamily since this spring and I can truly say they have made us apart of a family. From fellow medical mommas to the AMAZING team they have. We received a hospital visit on yesterday from the amazing Vanessa from the North Texas Chapter along with a special treat for all of us including grannie who had been on duty for the last two nights since dad returned to work. This is just a small reason why we love this organization so much and we are participating in the HopeWalk. Check out our page to donate today.
We are so blessed to have such amazing people in our village; from the PenFed family making sure we had great food to eat and Lady Bailey from waiting with us until he was out of surgery and bringing us great food and all the love and prayers from across the country.
I want to give you all a breakdown of baby Frank's heart defect details.
Heterotaxy
Double Outle Right Ventricular
Complete atrioventricular canel
Ventricular septal defect
Congenital pulmonary valve stenosis
Okay now I’m going to walk you all down our week.
Pre-Op (Friday):
All the scans and tests; height, weight, blood pressure, pulse ox, temp, ekg, echo, X-ray, blood work.
After surgery:
So we meant with Dr. Andersen and surgery went as it was intended. There was one thing with his heart rhythm did not return to his normal therefore they placed a temporary pacemaker.
This pacemaker will assist with the rhythm, they will monitor for no more than 7 days. If it does not return to his normal he would require a permanent pacemaker.
Morning (Tuesday) after surgery:
We had a good night. We are waiting on doc approval to take out some tubes. We rotated holding him last night. Everything is going like it should. Frank was able to drink some water then Gatorade and went to sleep with milk.
We’re a little sleep deprived, but he’s worth it.
Morning #2 (Wednesday) after surgery:
Overall we had a great night. He woke up a few times just checking his surroundings. He was in the bed all night. I was actually able to sleep, it was nice.
Morning #3 (Thursday) after surgery:
We were woken up by the team inside his room due to the temp pacemaker (currently his upper and lower chambers aren’t communicating properly). They had to adjust the wires (which is normal since he’s moving around more now) and all is well. He had no issues and was not affected at all.
He rested well in my arms after eating a full breakfast.
Great day today. We are in the step down unit from CICU. He is eating great and is on nothing but meds and just monitors.
They took the pacemaker off and will continue to watch his rhythm.
Morning #4 (Friday) after surgery:
We are on the Cardic floor now. He had some spells last night and he’s on some oxygen but still doing okay.
They are planning on discharging us tomorrow actually. So shocked since he’s doing so well, would have been today but he had to have oxygen last night.
Morning #5 (Saturday) after surgery:
We had a great night, pain is under control just needed Tylenol to rest. Mom sleep with him in her arms all night.
We are outta here!!!
Video on YouTube reflecting our pre-op and hospital stay.