PANIC

CODE BLUE. Two words you never want to hear.

On February 5th Willie had open heart surgery to widen his aortic arch. The surgery went beautifully. That morning we got to the hospital extra early to hold Willie and cuddle him not knowing when we’d get the chance again. We anticipated the surgery, from start to finish, to last until late afternoon. We were pleasantly surprised when we got reunited with Willie right after lunchtime.

The wait and the worry in our private waiting room while he was being operated on was heavy. Each time Michael’s phone would ring with an update, I’d get nauseous. Thinking about Willie’s tiny, little chest being cut open, with a man’s hands the size of his head working on him, made me break out in hives. (No joke, I’m still recovering and itching). The stress of the situation had gotten to me.

Since Willie was born up until open heart surgery, he was in the NICU (Neonatal Intensive Care Unit). After surgery he recovered in the Cardiovascular PICU (Pediatric Intensive Care Unit) for 13 days. When Michael and I entered his PICU room for the first time Post Op, it was an overwhelming sight. The machines, IV drips, ventilator, etc., all helping to keep our son alive was nothing short of overwhelming. Then in the middle of all the medical equipment laid our sweet, innocent, strong little Willie with an open chest. Not many can say they’ve seen their child’s true heart beat.

Will was showing big strides in his recovery that they were able to close up his chest a little over 24 hours after surgery. Michael and I were so proud of Willie for taking his recovery like a champ. He was doing so well that about 48 hours after surgery he was taken out of the medically induced coma and the doctors told us they believed he was ready to be extubated. The doctors no more than walked out of Willie’s recovery room after delivering such exciting news, when it happened. My heart plummeted right along with Willie’s.

I was standing bedside to him holding his little, soft baby fingers. His complexion started turning pale. He was scrunching up his face in an attempt to cry, but with the breathing tube resting on his vocal chord, no sound came out. My instinct kicked in. I turned to the nurse to tell her I thought something was off but before I could get the words out her face confirmed my fear. Yelling for the doctors, there was suddenly twenty medical staff hovering around my little boy. If the number of bodies wasn’t enough confirmation, the doctor’s tone and sense of urgency proved something was wrong. We watched on the monitors as Willie’s heart rate dropped lower and lower. The doctor looked over at Michael and I and firmly told us to get out. As we exited the room I heard terms I had only ever heard on Grey’s Anatomy. Crash cart, chest compressions, bagging him, etc. And the worst of all- CODE BLUE.

As Michael and I stood down the hall from Willie’s room, I felt like I was living out my worst nightmare. Michael held me in his arms as I sobbed and cried out. I closed my eyes and prayed. Begging God and saying over and over again that I would do anything for Willie to be okay. I couldn’t lose him. I’m not sure I could have picked up the pieces of my broken heart if something happened to him.

After what felt like an eternity the doctor walked out to talk to us. She told us he was okay, but that he had a pulmonary hypertensive crisis. Basically his blood pressure rose and was not allowing enough blood to get to his lungs. His heart started working extra hard to push the blood through until it was too tired to work anymore. His heart rate dropped, dropped, dropped, flatlined. (To read and understand more about pulmonary hypertension click here.)

The crisis caused Willie’s recovery time in the PICU to be extended. From that moment on the doctors were very conservative and we moved at a slow and steady pace. Willie’s pace. They gradually weaned him off medications and removed medical equipment. He has had no other pulmonary hypertension crises since.

WARNING: these pictures are overwhelming and not easy to look at. I post them only to show how strong our little guy is and so you can visualize how far he’s come in two and a half weeks. Only two and a half weeks! What a fighter.

Now that we are back in the NICU our focus is on feeding. Suck. Swallow. Breathe. This routine can be hard for kids who have Down syndrome because of their low muscle tone and their capability to latch on to a bottle can be challenging. Up until now all of Willie’s problems and needs had been fixed on our schedule. When the OR was available, when the nurse was back from break, when the ultrasound tech had an opening to perform a scan. With feeding, it is all up to Willie. The ball is in his court. We are cheering him on and providing support with therapy and practice, but successful feeding will only happen when Willie decides he is ready.

We get asked most often, “how much longer until he gets out of the hospital?” I wish we knew the answer to that question. We so badly want to go back home to Tulsa. To our home that I haven’t been to since Christmas. And as sick of the hospital as I am- the repetition of going up there all day, everyday, the smells, the people, the leaving my baby there every night when I leave- we will continue this pattern and schedule for as long as it takes. We are on Willie time. Willie’s team. Our exit ticket is in his hands.

Time goes by so slow, but somehow fast too. My boy is one month old today. ONE MONTH! He has accomplished so much in one month. I can’t wait to celebrate these milestones outside the hospital walls, but until then we will celebrate within them!

From the bottom of our three strong hearts, thanks for reading, praying, and loving us! We are asking for prayers that feeding continues to go well and moves in the right direction. Michael goes back to work in Tulsa, so I am asking for prayers for him and his heart as he spends days away from Willie for the first time. Most of all, instead of asking things from God, I just want to PRAISE him for his dedication, love, faithfulness, and healing he has provided for our family and Willie’s team. I challenge any non believer to witness a baby being born into this crazy world, carried on a journey like Willie is traveling, and NOT believe God has his hands on all of it. His name is all over this and there’s no denying it. Lord, we praise you!!!

Xo- Jenn, Michael, & Willie