To say that the past week has been hard would be the understatement of the year/decade/lifetime. One week ago today, our son (still so exciting to say), Philip Avery Stephens, was born. He was 7 lbs 12 ounces and 20 inches long. I once thought that most babies come out looking a little like old men and have to grow into their "cuteness", but right away he was the most beautiful thing that I had ever seen. And he was perfect, except that he wasn't. From the moment he arrived he sounded funny when he breathed. We knew it wasn't normal, but we never expected it to be as serious as it turned out to be. His vital signs were perfect, he slept well and did a good job breastfeeding (as far as we could tell) and wasn't very fussy at all. I had a very difficult labor (mostly post-labor) experience, and Phil and I were already very physically and mentally exhausted when the neonatologist sat down with me and told me our baby needed emergency surgery and would be transferred immediately to another hospital. Up until this point, we all had been thinking "well, Lindsey's had it pretty rough, but at least the baby is ok..." I broke down at that point ,thinking to myself that I must have done something to really make God angry...why else would all of this be happening to us?...
Avery has esophageal atresia with distal TEF, best left to be googled than for me to explain. Basically, his esophagus is in two parts. The top part just ends in a pouch, and the bottom part that's connected at the bottom to the stomach is connected at the top to his trachea. He was unable to get food to his stomach and had a lot of secretions that he couldn't clear before he had his surgery. Dr. Paidas (who did his fellowship at Johns Hopkins University) performed the surgery on Tuesday afternoon at Tampa General Hospital, and according to him, Avery was "as stable as a rock" throughout the procedure.
I learned very quickly that Phil and I have so much to be grateful to God for when it comes to our little man's condition. Often times, esophageal atresia comes along with a host of other very serious complications including heart, kidney, and vertebral deformities. Avery's case is an isolated defect, and other than the esophagus, he is a perfectly healthy little boy. Also, his condition is made much worse if the baby is a premie or if it goes undiagnosed for a substantial length of time. Avery was 4 days overdue and was able to have his surgery at just 2 days old. I know that God has a plan and that we have ultimately been blessed with our situation, however hard it was to accept just days ago.
Now we just wait. It is a long recovery requiring ventilators, chest tubes, sedation, a big incision, and lots of pain/discomfort for our baby. As of now, we are unable to hold Avery and most of the time are encouraged not to touch him or talk loudly to him as to keep him from coming off his sedation (necessary while on the breathing machine). This has been the hardest thing that I have ever had to do...to just sit there and watch him as he tries to cry and not to be able to comfort him, when all I want to do is to pick him up (or at least "pet" him) and tell him that everything is going to be ok. It is asking a lot of a Mom, even one with ICU experience who knows the importance of such things, to just sit back and watch her child suffer.
Today is the day that Avery is supposed to come off the ventilator. I am so happy that we will be able to see him open his eyes and that we will be able to touch and talk to him. I am worried though too because I know he will be in pain and he will cry, and I still won't be able to pick him up. With him off the sedation, I won't want to leave his side, which doesn't leave a lot of time for recovery on my part. Either way there is light at the end of the tunnel, and I feel that I just need to trust God to take care of my baby. He created him and knows what he needs. I found this excerpt today on another blog I follow, and it hit so close to home and perfect in it's timing (thank you, God) that it brought tears to my eyes. I wanted to share it, and thank everyone for all their thoughts and prayers over this last week. It means so much to us to know how much love and support there is for our family, and we are truly appreciative.
From "Streams in the Desert" by L.B. Cowman.
Many years ago there was a monk who needed olive oil, so he planted an olive tree sapling. After he finished planting it, he prayed, "Lord, my tree needs rain so its tender roots may drink and grow. Send gentle showers." And the Lord sent gentle showers. The monk prayed, "Lord, my tree needs sun. Please send it sun." And the sun shone, gilding the once dripping clouds. "Now send frost, dear Lord, to strengthen its branches," cried the monk. And soon the little tree was covered in sparkling frost, but by evening it had died.
Then the monk sought out a brother monk in his cell and told him of his strange experience. After hearing the story, the other monk said, "I also have planted a little tree. See how it is thriving! But I entrust my tree to its God. He who made it knows better than a man like me what it needs. I gave God no constraints or conditions, except to pray, 'Lord, send what it needs--whether that be a storm or sunshine, wind, rain, or frost. You made it, and you know best what it needs.'"
God made Avery and knows best what he needs. Please continue to keep him in your prayers.
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