Sunday, September 18, 2011

TCH- Diagnosis

Diagnosis: Transposition of the great arteries (TGA), Double outlet right ventricle (DORV), Ventricular septic defect (VSD)

Over the course of the next 9 days, I was driven back and forth to the hospital to see Max and Edgar. Nothing was really happening with Max. They were monitoring him, but overall he seemed like a normal baby. He stayed in the CVICU until they decided it was time for his first procedure. He was going to the catheter lab to get a heart catheter. The plan was to make the hole in his heart larger so the blood could circulate easier. Dr. Ing came in to explain the procedure. He spoke very quickly and he seemed confident that the procedure wasn't going to be a big deal. They were going to go up through his leg to perform the procedure. (Amazing)

We were escorted down to the Cath Lab and we obtained his anesthesia clearance. They took Max away and within an hour he was back resting before he woke up from the anesthesia. Edgar and I were pretty calm through this procedure. The doctors and nurses assured us that this was pretty routine and there weren't many risks. Max recovered well from the procedure and at the end of the 9 days we were allowed to go home. I can remember when we were waiting for our discharge papers being so afraid of going home. Dr. Lindsay, a resident, must have come in more than 2 or 3 times to tell us how to tell if Max's health was deteriorating. He was so patient with our repeated questions. He told us more than once that Max was not going to die suddenly. I needed to hear that.

We were instructed to see our pediatrician once a week and to come to TCH for cardiology check-ups once a week. It seemed like a major chore to me, but anything was better than being stuck in the hospital. Anything was better than being separated from my husband and my son at night.

Once we were home, things momentarily went back to normal. Max was (and is) a wonderful baby. Maybe it was because he was put on such a stringent schedule in the hospital or maybe it's just his nature. I was trying to adjust to having two children. I was adjusting to breastfeeding again. But mostly, I was adjusting to my amazement of Max.


  1. Hi Kat! I found you through Blair, and I wanted to tell you that Max is added to the special place I have in my heart and my prayers for Cardiac Kids. I, too, had a normal pregnancy, healthy delivery, my 3rd Baby was a beautiful Boy! One week later he was in heart failure and flown to DC Children's Hospital. (an hour from us). We have been in and out of there 3 times for various surgeries and traumatic events. Each time I have known that exact feeling you described about feeling the power the other people's prayers. God's grace is SO amazing!
    We can talk all day about how great God's grace is, but it is once we are under the weight of that Cross that we truly understand that it is how we breathe. Please be assured of my constant prayers for Max and for YOU! I know as Mama you carry a special weight, but lean on Mama Mary! (I used to ask her to sing to Joey while he was in CICU and I couldn't be there.)

    I also know that being home is scary - sometimes even scarier than the hospital. Keep relying on God's grace. Another persistent thought that kept me breathing was that as much as I love Joey, God loves him EVEN MORE. No matter what happens, God Loves you and wants what is best.

    I wish I could hug you! The surprise of not having the life you envisioned is rough, but these Cardiac Kids (or Sacred Heart Babies as my friend calls them) are special kids. We have found new joy in our already happy family that only comes from the Lord.

    A note of hope: Joey almost died on several occasions due to his particular serious defects, and he is now a chubby, happy, healthy 15 month old.

  2. Well here you are, smack dab in the place where you never wanted to be---the parent of a sick kid, but one who is never-the-less super,duper cute and perfect in every way!

    My friend Kate T and I had a dramatic experience of having two little newborns at Children's Hospital in Washington D.C. at the same time last summer. Both our kids are totally THRIVING at the one year mark. My little girl Tess is cured for life and her friend, Mr. Joey, is practically there himself.

    Most importantly, both Moms are fine (and sane), our marriages are great, our older kids are happy and we're even both PREGNANT again! Only grace could get us on that roller-coaster ride again, right?

    Kate and I are lay Carmelites. We got a special job to pray for our "Sacred Heart Babies" as we call them.

    Just know that this is a very, very intense time for your family. There is SO much grace with you, and you're whole family.

    I felt like coming home from the hospital was very, very scary. I missed having all those monitors to reassure me that my baby's heartbeat and her sleep apnea were no cause for concern. Be very, very gentle with yourself and Trust as much as you can in God's loving concern for your son.

  3. Abigail and Kate-- I have no words for how meaningful your comments are to me. I am being crippled with fear over Max's next surgery and every little thing in between. I am forever grateful for your prayers. At one time I had a Brown Scapular of Our Lady of Mount Carmel. I will pray for your families and for your pregnancies. What a blessing!!