October 17, 2016
My baby had open heart surgery today. I keep repeating that. In fact, I keep repeating, " I have a baby. I have a baby and he had open heart surgery today."
Dan and I were at the hospital early this morning. We were able to hold Louis before the anesthesiologist came. Just before Louis was taken to surgery, we had two OR nurses, the anesthesiologist, the surgeon, and three ICU nurses giving us pre and post op information. The surgeon went over Louis' complicated procedure for a third and final time with us, complete with hand drawn diagrams. I had to pick a spot on the floor to concentrate on or I think I would have passed out. Louis' surgery lasted the better half of the day. He was only on the heart bypass machine for under 3 hours. I can't believe I've just said that, "only on the bypass for.." My baby is 5 weeks old, and he had open heart surgery today.
Overall, the surgery went as well as it could have, considering the uniqueness of Louis' anatomy. Louis' procedure included the artierial switch (diagnosed as Transposition of the Great Arteries, where they switched the aeorta and the pulmonary valve), patching of the VSD (Ventricular Septal Defect between the left and right ventrical), and removal of some heart muscle just below the outflow of the pulmonary valve (referred to as Pulmonary Stenosis). There are intricate details of each procedure that I can only explain in person, with a lot of hand drawn diagrams and a lot of tears. There is some concern for leaks through the repairs, which are normal in such a big surgery. His heart and the repairs will be closely monitored as he grows. It could mean future surgeries throughout his life but we won't know that right away.
Right now, the next 24-48 hours are very critical for Louis, as his body begins to sort out his new heart anatomy. The PICU doctors and nurses are giving him the best care. Tonight will be a delicate balancing act of monitoring blood pressures, the in and output of fluids, and swelling. This is all standard procedure after such a big heart repair. Louis is sedated but not on any paralytic. He has a breathing tube, several IV's, three chest tubes, a catheter, two leads to monitor the electricity of his heart, and a feeding tube. They have a blanket over him and thank God because I am not ready to see all of that.
I have been arguing with my emotions for weeks. I am so grateful for the care he is in and at the same time, I feel a great saddness that I am unable to give my baby what he needs. Sometimes, I feel terrible that a team of strangers know my baby's needs more acutely than I do.
But then I have to repeat, "I have a baby. I have a baby and he had open heart surgery today."
And those needs are greater than my own.
Comments (6)
So thankful his surgery went well! Continuing to pray for healing. And remember,you ARE giving your baby just ehat he needs. The doctors know how to fix things, but you know him and you are doing the absolute best for him! Prayers and hugs for you!
Nicole you are giving him just what he needs your heartfelt emotions and TLC through the nurses. They are your hands for now. So appreciative of the detailed notes. Thank-you and stay strong!!
You have a baby. You're a mom. You're Louis' mom! I'm so grateful for his team and the care he is getting and thank you for keeping us posted on his progress. PS look at you! You're new at this and already such a strong, loving, fantastic mom. You, Dan and Louis are an amazing, remarkable, wonderful family. {{{ ❤️ }}}
Nicole I am so happy to hear Louis is out of surgery and did well, but if anything I am in great awe as to how you are handling this and able to update us to keep us all informed on such a hard thing to experience. You are Louis mom and you do know what's best and that little boy is SO very lucky to have such a Great MOTHER like you!
Oh! I am so glad to read this update! I'm so thankful that his surgery is behind him now, and the healing can begin. Dear Little Louis- what a strong baby you are for all you've been through in just five weeks. I weep for you and your parents as no-one should have to endure such seriousness at the beginning of life. But Oh! how thankful I am for modern medicine and the hope that comes from it. Nicole, it takes a village to raise a child, right? And your village right now is mostly hospital people. You, as his mother will fill a place that no other person can, same for Dan as his Father. I pray for you guys as you juggle all of the emotions that being a new parent brings, on top of the complications of having a child that needs medical care. Give yourself Grace, give each other Grace, and know that you are providing Louis with exactly what he needs right now. hugs to all of you.
Strength to Louis and his wonderful parents.