Week 26 — A Clearer Picture

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”

 

 

 

9 thoughts on “Week 26 — A Clearer Picture

  1. Chelsea S's avatar Chelsea S

    Thanks for the update! So glad you were able to see and do so much while in Boston this last time. I think it helps… things will at least feel a tad familiar when you get there for Theo’s birth. My MIL is a nurse too and has been a huge help on this journey! It’s great you have her as a resource. You guys are crossing all the things off your list and preparing and educating yourselves as much as possible. Now you nest and wait!! So exciting!

    PS, that photo of the 2 of you at the top of the blog… swoon! ❤

    Liked by 1 person

  2. Gary Becker's avatar Gary Becker

    Thanks again, for the update. You guys are great parents already! Best of luck with everything and we’ll continue to keep Theo and you two in our thoughts and prayers. Love, Gary and Bernadette

    Liked by 1 person

  3. Lorraine and Bob Chillemi's avatar Lorraine and Bob Chillemi

    Our thoughts and prayers are with all of you! Baby Theo is a special warrior who will rally ! God is good. He will protect Theo. Can’t wait to meet him when you come to the island. Hugs,

    Liked by 1 person

  4. Coletta Lenhart's avatar Coletta Lenhart

    What a beautiful and brave summary of your journey. Your amazing faith and strength and the love of your great family is the best treatment this lucky little baby could possibly receive. Theo will be in my prayers. As the day of his arrival is quickly approaching , the story of his life will begin and he will grow and flourish with the the help of the best medical team possible and the love of his wonderful parents❤️.

    Liked by 1 person

  5. caitturner814's avatar caitturner814

    Keep posting! Your journey is incredible and it’s so important to be shared. You guys are doing an amazing job and Theo is so lucky to have you guys as parents. The blog is amazing and I shed some tears while reading it. Make sure you take full advantage of the skin-to-skin contact during that first week. Theo will love it! We have you guys in our thoughts and we are waiting the arrival of this little warrior. I love the quotes you have posted. “Trust the path” ❤

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