As you already know, he was born without a heartbeat, but I found out recently that he had some very weak heart tonal sounds. He needed a very aggressive resuscitation, but they were able to bring him around. He was quite difficult to stabilize and the first two days were very very touch and go. During the first 24 hours, we honestly did not believe that he would make it and we prepared ourselves to say goodbye to another son. In many ways it seemed cruel to keep him here without his brother, kinder to allow them to be together. The doctors were very gloomy and didn't give us much hope. We felt peace in knowing that he was in the Lord's hands and we knew that we could say goodbye if we had to. We had already survived that scenario once and we just didn't want him to suffer. It seemed to us that the boys may be destined to be together in death as they had been in life.
We spent the day with Dex in my hospital room. While family members, including Justin, went to the NICU throughout the day, it wasn't until the evening that I was strong enough to be wheeled down to the NICU and stand by the isolette to see this little peanut for myself. By the evening we were starting to hear little bits of good news. They had had to make dozens of interventions to stabilize him, but he was actually responding to those interventions better than they had anticipated. We were absolutely elated and so filled with hope and expectations.
By the next morning we started to get the feel of that special "NICU roller coaster" we had been warned about. We woke up with news that his brain scans were showing signs of seizure activity, his kidneys were not functioning at all, his heart was not contracting properly, and a few other disturbing updates that had us again despairing and preparing for the worst. All we can do is pray that we can know, understand, and accept the Lord's will for Crew. We don't know whether that will mean that we have to lose him like we lost his brother, or whether he'll stay here and be our miracle baby and be perfectly healthy in time, or he'll stay here and have severe disabilities, or something inbetween. One day at a time. We just enjoy every minute we can with him. I love being with him. He's my drug of choice. Being near him calms my anxiety and thrills me to pieces.
Slowly and surely things have been gradually improving since last week. I can't even believe the strides that this little guy is making:
He is completely off his blood pressure medication, his kidneys have started to function, his urinary catheter has been removed and he's peeing like a race horse, he's pooping up a storm (you should have seen the diaper I changed today. Very exciting, very gross). He is off the medicine that makes his heart contract properly, they have started feeding him breast milk through a tube and he's digesting it perfectly. They very rarely have to sedate him for agitation, especially now that he has enough tubes removed and he's stable enough to swaddle. Our babies love to be swaddled. His bilirubin count is so low that they have completely discontinued the bilirubin lights. He's on phenobarbital for the seizure activity and hasn't had any more.
He's still very swollen with fluids from the trauma of his birth and all the things his body is trying to figure out. It's a very delicate balance to keep him stabilized, but all things considered, he's doing really well. Even with the swelling, he has lost 3 ounces. He now weighs 1 pound 5 ounces. He's not breathing as well as he was several days ago and they have had to increase his oxygen. We don't love that, but it's part of the NICU roller coaster and we've been so spoiled this week with so much good news that we can't be too disappointed by a tiny setback.
He still hasn't fully opened his wee little kitten eyes, but he sure does try when I'm there. He isn't such a lazy breather when I'm with him and his blood pressure is much better when I'm with him as well. He clearly knows who his mama is and responds in ways that make my heart melt.
The prayer and faith of our family and friends is making such a difference in his success. We remain cautiously, guardedly optimistic about his future. He has a very long road ahead of him and we still have a lot of concerns about his short term and long term health. The doctors always say "there is no reason not to be realistic. And there is no reason not to be optimistic. But it's all up to Crew."
Without further ado, here is our Crew J. Grandma B. calls him "Crew Under Construction", which totally fits. We think he's a wee little darling.
Getting his first kiss from mama on the head.
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