However, I still feel the need to post about Evan's progress over the past months, because we will be coming home from the hospital soon. It will be a very, very happy day, and will mark a huge milestone.
Back to where I left off-
July 31st- Evening.
Evan made it through the surgery to place the silo just fine. Carl returned to my recovery room in the hospital, and showed me the pictures he had taken. I got to move around some time later, when the spinal finally wore off, and we loaded me into a wheelchair to see Evan in the NICU.
He was on the oscillating ventilator, which is a different sort of machine- it gave him hundreds of tiny, small breaths a minute, causing his body to vibrate. He had a line going direct to his arteries, placed by the surgeon to provide nutrition and medications. He had a catheter placed as well. A tube ran through his mouth to his stomach to pull the digestive fluids from his stomach so that they wouldn't eat away at his stomach. It was shocking to see my boy laying there surrounded by machines that would keep him alive. But, oh I loved him so very much.
He was very sedated, of course, having had a VERY big day. After talking to him a bit, Carl and I went back to my room
August 1, 2011- Exactly one month before Evan's original due date. We returned to the NICU that morning to see how Evan was doing- we found that the surgeon had already been there to reduce the size of Evan's silo, by pushing gently on the bag and, oddly enough, tying it off at the top.
August 5, 2011- It took them only 5 days to push his organs in enough that the surgeon could wrap his belly to prepare for surgery to close him.
August 8, 2011- Evan had his closure surgery. We were incredibly nervous. We had no idea if they would be able to achieve closure, and how Evan would react to such an invasion to his body.
But finally, the surgery was done, and the surgeon met us afterward, told us that Evan did really well, and that he was able to close him us with the aid of a mesh patch to help with muscle closure.
Now it would be a waiting game to let him heal, and get him off the many medications, get him feeding, and wean off the ventilators. They also told us that he would swell some more from the trauma of the surgery, which is a typical reaction for a baby to any kind of surgery. He had his first poopie diaper at this time, which was a BIG DEAL.
August 14, 2011- Half a month had gone by, and we had barely seen our boy move much, or open his eyes open hardly at all.
But we were still encouraged by the little bit of progress.
August 17, 2011- Evan was making progress, but we then had a small setback in the form of him being diagnosed with pulmonary hypertension. Pulmonary hypertension is abnormally high blood pressure in the arteries of the lungs. It makes the right side of the heart need to work harder than normal.They had started feeding him a little of breastmilk via NG tube. It started out at just 2 ml per hour.
August 20, 2011- I got to hold Evan for the first time. The joy at this was not even diminished by Evan's circumstances. The nurses had to rearrange his tubes and machines, but they managed it- I got to hold him for 20 minutes before his oxygen saturation levels began to get too low. BUT I HELD HIM.
August 25, 2011- Evan was still swelling. The nurses began moving him around more. They did baby massages. He was getting dieuretics to help rid his body of the fluid he was retaining. But he still weighed 8 pounds. Considering he was just receiving the nutrition he needed to stay alive, but not gain weight, and his weight at birth was 5 1/2 pounds, it was a shocking amount of fluid retention.
August 30, 2011- Evan began looking so much better. We had attempted to take him off the ventilator, but he did not take to it. Daddy and I had changed Evan's diaper, and Evan turned blue. It's scary to think that you can't change your child's diaper without him having an issue.
Looking back at all this, and reviewing my old journal's posts for the month of August, I can't help but shake my head. I truly believe that the only thing that kept me going and staying moderately positive was the belief that Evan would be home before October, and my enormous love for that boy.
I might have cried, I might have been angry, or depressed, but the majority of my time and focus was on him.
And despite the circumstances, I have felt since my pregnancy that being a Mommy is one of the best things in the world.
Tomorrow, I will continue Evan's story- months 2 & 3. And I will be sure to update on his surgery as well. :-)
Just re-reading the ordeal that Evan (and you and Carl) have been through these past 6 months since Evan's birth has brought HOME how very blessed we are to have Evan here today! He has come SUCH a long way in his recovery since birth! We are so very proud of him, and have been anxiously awaiting the moment when he can get home, free from the N/G and tracheotomy tubes. I am sure Evan will think 'Home' is a pretty awesome place! <3 Love you all! We pray without ceasing!
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