U of M Visit Update – Part Two

This post is a follow-up to yesterday’s “quick” update about our U of M visit on Thursday.  If you didn’t get a chance to read that post, you might want to read that before reading this post.  This has more of the details that we learned during the day and shows you why yesterday’s post was “quick”.

As we stated yesterday, overall we were very happy with our first visit with everyone at U of M.  The day was totally exhausting even though we weren’t doing anything physically taxing.  It was definitely mentally and emotionally taxing.  But it was worth it and for sure gives us direction and hope.

We learned that ideally our little baby girl will have her first surgery 2-5 days after she is born.  She needs some time for her lungs to develop before they do her first surgery.  She will be fed intravenously before her surgery because if she has food in her digestive system, there can be blood supply issues that cause serious damage.  Of course, we do not want this.  After the surgery she will be fed with a feeding tube with breast milk (hopefully).  Once she can digest the milk and is getting stronger, she will be able to try drinking the milk on her own.  We talked with a few people about giving her a pacifier to develop her sucking muscles because of the care package from Sisters By Heart (thank you!) and everyone was supportive of it.  Glad to hear that.

If everything goes well, our little baby girl will be able to come home 2 weeks after the surgery.  Of course, this is best case scenario and if there are any complications or whatnot, we will be at the hospital longer.  She may still have a feeding tube when she comes home but most babies do not need it long after they get home. 

At first our little baby girl will be in the pediatric cardiology intensive care unit.  She will have her own room and her own nurse assigned to her.  One parent is allowed to stay overnight with her while she is the ICU.  Once she is strong enough, she will be moved to her own room in the general pediatric cardiology unit where both parents can stay in the room with her.  This is a big change for the new hospital because all of the rooms are private at the new hospital and before they were all shared rooms. 

There are also many other lodging arrangements that are available from a hospital at the hospital, to a Ronald McDonald House across the street to numerous hotels in the area.  Obviously, we only live 50 minutes away and have our older daughter who will be at home.  So we are still not sure how we will handle the lodging arrangements.  There is still much to figure out but it is good to know our options.

The second surgery will be when our little baby girl is 4-6 months.  This will put us in late July through September.  It all depends on how she is growing and developing as well as scheduling with the hospital.  For the second surgery she will likely be in the hospital about a week with the typical disclaimer that if anything goes other than as planned it will be longer.  Since my sisters are teachers, we are hoping that our little baby girl will be strong and ready to have her surgery before the school year starts.  But of course, we want to do what is best for her no matter what.

Her third surgery will be when she is around 2 years old.  The hospital stay for this surgery is often under a week.  And the third surgery is the end of the planned surgeries.  She will have to continue to go to her cardiologist every year and with any issues that develop. 

It feels good to have a plan laid out for us.  Although there are so many TBDs, it is still comforting to know what we are looking at and that we are working with a team who has been through it so frequently with high success rates.  Dr. Bove told us another interesting story about a medical student that was finishing his rotation in pediatric cardiology surgery.  He had an oral examination at the end and was asked what the most common congenital heart defect was.  The answer is a VSD (a hole in the wall of the heart) but this guy said HLHS, which is very uncommon other than at U of M.  But people come to U of M from all over the country and world to get treated at U of M and Dr. Bove for HLHS so that student thought it was so common.  Funny story but I hope that guy isn’t working with us in the future!

Another thing we talked with Dr. Bove about is the future for our little baby girl.  Dr. Bove says that he sees no reason why the heart cannot function as it is repaired for at least 30-40 years.  This is hard to think about when you actually put it in practical terms.  This means that she can live until she is 30-40 without having to have any further surgeries.  But after that, it is likely she will need further help.  Dr. Bove said that if medical technology does not progress from today over the next 30-40 years (which, as we all know, is VERY unlikely) that she would have to have a heart transplant at that time.  It is scary but at least there is a plan. 

The good news is that Dr. Bove says there is a lot of promising research going on right now that will advance over the next years and be there to help our little baby girl in the future.  Dr. Bove mentioned that research is working on regenerating the lower part of the heart using parts of the upper heart that are cultivated.  Also, there are implants that are being developed that would be put in an artery to help pump the blood and take some of the pressure off of the right ventricle.  This is all very encouraging and Dr. Bove also says that it is impossible to predict where we are going to be in 30-40 years because just 30 years ago the three stage surgery as they do it today could not have been imagined.  Needless to say we will be doing further research on the research that is developing in this area and I will be keeping an eye on patents in this area as well.

In addition to my regular OB appointments, we will have additional echos (ultrasound on the heart) scheduled.  We have our next echo scheduled at our local hospital so we do not have to go out to U of M.  It will be January 5^th.  We will then go back to U of M for a day full of appointments on February 3^rd.  It will be at that appointment that we will discuss our birth plan in more detail.  Right now it isn’t clear if we will wait for our daughter to decide when she wants to make her appearance into this world or if we will schedule an induction.  We want to do what is best for our little baby girl and that means ensuring she is born right at U of M rather than some other hospital or anywhere else for that matter.  We are about 50 minutes (driving the speed limit) to the hospital.  We are not sure if this would mean they want to schedule an induction or if they would allow us to come in when I have an indication of labor.  We shall see.

If you made it through this post, CONGRATULATIONS!  It is so long!  There is just so much to share!  Thanks for your support.