Reiss is now about 6 days old and doing great. She lost about 10% of her weight between birth and yesterday – which is completely normal- but showed her first weight gain last night. She is eating and sleeping well just as any normal full term baby should. The days seem to go by quickly with feeding, changing, cuddling and repeating.
Meeting with Cardiologists
We talked with the cardiologists yesterday afternoon and they said it is “highly likely” they will do a catheter procedure to implant a stint in the ductus to keep it from closing later this week – possibly Thursday. Currently, Reiss is on medicine which keeps this ductus from closing (usually it closes hours after birth) so her blood can flow to the lungs as needed. They would insert a catheter into an artery in Reiss’s leg, weave it up into her heart, and deploy the stint in the ductus. The procedure would take 3-5 hours and recovery would be about 24-48 hours. After recovery, as long as she is eating and growing to their standards (not sure on what their standards are), then we can go home.
They are leaning towards this surgery because it is less invasive. The cardiologists and surgeons meet every Wednesday to review cases. After their meeting, we should have a firmed plan of action, as well as a procedure date and time. We are told we will know this around noon tomorrow.
If they do choose the stint procedure, Reiss will be moved to the 7th floor one day prior to surgery to the CICU (cardiac intensive care unit). From there she will go to her procedure on the same floor, then back to the CICU for post-op. During the procedure, she will have a feeding tube and breathing tube inserted. As soon as those are able to be taken out, she will then move to what they called “7 West”, which is a “step-down” recovery center. As log as she is eating and growing well, she will be discharged from there.
There are some possible complications.
They will measure the ductus before and after placing the stint to make sure the stint matches the length of the ductus. If by chance the stint is shorter than the ductus, you run the risk of the ductus closing at either end after they take Reiss off of her current medicines.
There is also a chance the stint procedure does not work. For this reason, they will have a heart and lung machine ready to do a complete repair. There is less than a 10% chance of that happening.
If Reiss is not doing well, she may need physical therapy after surgery. If she is not eating well, she will need a speech therapist. If either of those are necessary, we will be admitted back into the NICU. There is also a chance that she will need a feeding tube, but we could go home with that if needed.
If all goes well, we will be going home sooner than later. The doctors here will set up our visits with cardiologists in Springfield where they will track her progress. It is important that her oxygen saturation levels stay at or above 75. Right now they are high 80s and 90s. If her behavior changes or she starts turning blue, then we will have to contact our cardiologist or pediatrician.
She will be on meds – specifically aspirin for thinning her blood and possibly a diarrhetic.
They will let her grow, with the goal of getting to the 5 or 6 month mark before needing surgery. At that time, they will decide on what type of surgery they believe is best for Reiss. We will have to travel back up to St. Louis for that surgery.
Long Term Development Issues
They also mentioned the possibility of long term development issues such as learning disorders or attention behavior problems, which are more likely in children with heart issues. Motor development should be fine and her IQ should be similar to the general public. We are to be aware of any delay in development – such as starting to crawl later than expected – and to notify our pediatrician. They expect a “minor delay” in development as opposed to a “significant delay.”
They also sent off for genetic testing. Since she has heart issues and a 13th rib, there is a higher chance for a generic disorder. Additionally, there are chances of “normal variances” in her genes that do not hinder development. If they find any “normal variances” or other disorders, Roy and I will need testing. Also, all three of us will need to see a genetics doctor. If they find nothing, then we will not need any additional actions.
With any additional children we have, we will get a fetal echo since the chance for a second baby having a heart issue increases now that we have already had one. Down the road, if Reiss chooses to have children, she will also have fetal echos.
We heard many scenarios and “if, then” statements yesterday, leaving us a little more worried than before. The doctors
have a very positive outlook, despite what could happen. Reiss is eating and growing well. She is sleeping well and is very alert when she is awake. They believe that she more than likely will be able to bounce back quickly and without issues since she is already doing so well. They are also confident in their abilities in the catheter procedure, as they have done the procedure many, many times with success.
It is hard to not focus on the possible outcomes, but we are working on staying positive, getting rest and making sure we bond and cuddle with our baby girl up until her procedure.
Thank you for all of your thoughts and prayers. Please continue to pray for a successful procedure, strong recovery, and sense of peace for us as we digest all the information and prepare for a possible procedure later this week.
Sara, Roy, and Reiss