Most days we forget that Theo has a heart defect.  He is developing beautifully and his contagious smile cannot be missed.  

This month brings us one more reminder of his fight.  On September 27, Theo will be admitted to Boston Children’s Hospital for his final surgery, The Fontan.  They will perform a pre catheterization on Tuesday September 28 to determine their game plan. Surgery will be held that following day, Wednesday September 29.

During this surgery, the inferior vena cava, a large vein that carries deoxygenated blood from the lower body into the heart, is disconnected from the heart and attached to the pulmonary artery. After this operation, all of the deoxygenated blood from the body goes to the lungs without passing through the heart.

We are 2 years out since Theo’s Glenn surgery and for those of you who have raised children, A LOT changes in those two years.  Our journey continues as we begin to navigate surgery with our active, curious, toddler.  

This is certainly going to be difficult, but I have no doubt in my mind that we will be welcomed just as warmly as we were in past years.  As always, we are beyond grateful for Theo’s team and our amazing housing hosts.  

Stay tuned for updates along to way.  Thank you for the continued love and support.  Xo   

Our little fighter continues to prove his strength every day.  Surgery went well and after 2-3 days of expected pain and discomfort, Theo was back to his smiley self.  After undergoing surgery on August 8th, he spent a total of eight nights in the hospital and we returned back home to Rochester on Saturday the 17th.

Since we’ve been home, we’ve had a few post-op visits.  We had a virtual follow-up with Boston Children’s during which they checked Theo’s incision and went through a series of questions regarding his recovery.  All is healing beautifully and he has been recovering well.   We also visited Theo’s Rochester cardiologist, Dr. Kuebler, who performed an EKG and follow-up echocardiogram.  All results were favorable.  Lastly, his trip to the pediatrician was also a success as we learned that he’s putting on weight like a champ.  We’re on our way to the 15 pound mark any day now.

For the time being, Theo is on three different medications; a blood thinner, a blood pressure medication, and a diuretic.  The hope is that as his body adjusts to this new circulation, we can eliminate one or two of those.  The good news is that we have graduated from the home monitoring program, and no longer need to check his oxygen saturation levels and weights daily.

Three months from now, Theo will have another echocardiogram as well as a lung scan done at Strong Memorial Hospital in Rochester.  At this point, we hope to see his heart pumping strongly and a nice blood flow to both lungs.  We find ourselves “cautiously optimistic” that Theo’s next and final intervention as a child will be the Fontan surgery in Boston.  This would take place between the ages of 2 and 4.  If some adjustments need to be done before then, we will take it as it comes as we continue to “trust the path”.

Each and every step of this journey, we grow more and more grateful for the care that Theo has been given, for the prayers and support that surround us, and most importantly, for the “divine gift” that our little boy has been.

 

 

 

Thanks to all of you who have checked in and continued your thoughts and prayers for baby Theo.  And a big thanks to my amazing mother-in-law, Annette, for joining us on our trip to Boston at the end of December.  It was reassuring, as a nurse, to hear your positive feedback on the hospital and staff, and your comic relief during the lactation consultation will never get old!  We are both grateful to have you with us on our journey.

Our appointments with Brigham and Women’s Hospital and Boston Children’s Hospital were very eventful, and Brian and I left feeling comfortable, prepared and hopeful.  I met with Brigham and Women’s first and they are ready for our arrival on March 20th.  During the appointment with Brigham and Women’s, I was told that I would be induced at approximately 39 weeks, which would fall around March 30th.

After leaving Brigham and Women’s, we met with a lactation consultant at Boston Children’s. The goal will be to give Theo as much skin-to-skin contact and breast milk before he goes in for his first procedure at about a week old.  We can’t wait for the opportunity to hold Theo and we’re hopeful that the first week goes smoothly.

We were then given a tour of the Cardiac Intensive Care Unit.  I was surprised with the ease that we felt while the nurse took us around the CICU.  The images we had of Theo in an incubator following his first procedure were far from what we’ll experience.  The babies in the CICU were so peaceful in their own small hospital beds and private rooms, and the nurses were in the middle of replacing their “Merry Christmas” balloons with “Happy New Year” balloons.  The nurse told us that Brian and I will have access to the CICU 24 hours a day, seven days a week, and visitors will be welcome two at a time.

After our tour of the CICU, we had a follow-up fetal echocardiogram, and as always, the doctors did a wonderful job explaining the results.  At a previous appointment, the doctors thought that Theo’s heart had two ventricles that were inverted and missing the wall that separated them; however, we were informed after our most recent echo that there is only one large ventricle with a second “collection chamber” that will not function as a ventricle.  This eliminates the possibility of doing the biventricular procedure that would result in two working ventricles, but it makes the treatment plan much simpler and the surgical procedures much more routine.

We are still uncertain whether Theo will have a stent or shunt put in place during his first procedure.  Our fingers are crossed that the less invasive stent can be used, but we won’t know which option is best until after birth.  In the meantime, we remain hopeful.  We will continue seeing the OB here in Rochester every two weeks, and Theo seems to be doing just fine.  He is very, very active!  And we have been active as well — this whole “nesting” thing is in full force.  We are getting ready for our little warrior!

Mantra for 2019:  “Trust the Path”