So. We left off with Evan having been born, and undergoing 2 surgeries. One to place the silo on the day he was born, and another at 8 days to close him up. We saw both dad and I getting to hold Evan for the first time, and the struggle with Evan's swelling and the ventilator.
September 1st- Evan's wound was healing, and we were talking about taking him off the ventilator. It was starting to get to us, being in the NICU at Harris. After the initial shock of everything finally passed, and we got to see our boy waking up and feeling better, we were getting more resentful about getting kicked out of the NICU when they admitted a new patient, and having absolutely no privacy- I began thinking about transferring him to Cook Children's. I initially started bringing it up with a few nurses, but met resistance.
September 4th- I posted the following on our caringbridge site-
"He had a nurse that had been there to help stabilize him right after birth yesterday, and she was so very impressed with his progress. She told us- "To be honest, I didn't think he was going to make it. But he's done so well! He's doing better than our other omphalocele babies."
I remember very well lying in my hospital room right after the c-section, recovering from the shock of everything and the doctor coming in to update us. He said that they were still working on getting Evan stabilized, and that "he has a 30-40% chance of not making it."
I told the nurse yesterday that, and my immediate reaction- "Okay, I understand you don't want to give us any false hope- But our little guy is a fighter, and there's a 60-70% chance that he'll do just fine. And that's good odds."
Throughout this whole time, it's been hard. Hard to keep hopeful in the face of very scary moments with Evan.
It seems that are two paths that Carl and I could take.... The path of hope is uphill and full of twists and turns and obstacles. The path of despair intersects the path of hope when it is at it's hardest, and is downhill and straight. It would be easy to take the path of despair. But we can't. Evan needs us to be strong and keep hoping and fighting just as hard as he is.
So each day we see him thriving makes the path of hope a little straighter, and little more even, and takes away the obstacles. It gets easier, and the path of despair gets further away."
September 6th- We were off the ventilator! I got to hear Evan cry for the very first time.
September 16th- We were making progress in inches rather than leaps and bounds, but we were happy to making progress at all.
September 17th- Evan started running a fever, and acting like he felt horrible. They did all kinds of cultures, and found he had an infection in his bladder. Poor baby had to get an IV for antibiotics, and we took a step back on his breathing progress. He was taken off the high-flow nasal cannula, and put on the CPAP. At this time, I was making the decision to move to Cook Children's new NICU with private rooms. We just felt we would get more quality time with our boy.
September 21st- We made the move from Harris to Cook Children's. Evan was back on the nasal cannula, and was all better from his bladder infection.
September 30th- Evan turned 2 months old. We started trying to let him breastfeed. We had a little confusion at first, but then he took to it like a pro!
October 4th- I was called at 1 AM by a call from Cook Children's saying Evan was having some troubles, and that they needed to do a blood transfusion. I threw on clothes, and drove up there immediately. They did the transfusion, but he was once again put on the CPAP.
They put staples on his wound to help the closure, as well.
October 6th- Evan had one good day, and then a bad one. The doctor suggested waiting to see about putting him on the ventilator, but warned us that the choice may be made for all of us by Evan's progress. He had not really grown much recently, length-wise, and though he is 9 lbs 14 ounces, at least 14 ounces of that weight was fluid retention. He stopped breathing that night, and they had to "bag" him.
October 10th - Evan had an infection in his wound closure. It was leaking pus.
October 11th- It was myself and Carl's two year anniversary, and Evan went back on the ventilator.
However, we decided to go ahead and get the tracheostomy done.
October 27th- Carl's birthday, and weirdly enough, the date we had Evan's tracheostomy done. It went well, and we settled in to see how this would yet again change what we would do.
November 4th-
I was so shocked to see Evan's wound after dressing was taken off. It had opened up completely.
Believe it or not, this was better.
November 14th- Evan was doing better, and we got to give him his first big boy bath. We began talking about going up from the NICU to the transitional care unit.
November 23rd- We moved up to the TCU the day before Thanksgiving. Evan was still on the "regular" ventilator, but Carl and I had begun changing Evan's trach ties and taking part in all his care, including wound care, baths, and physical therapy.
December 6th- Evan was 4 months and some change... He was doing well weaning down on the ventilator, and we had begun doing more and more "normal" baby things. Since it was December, Cook Children's did Christmas up right, and had the Cowboys (football team) come to visit, had Santa come by, and we got to go down to "Santa's Workshop" to pick out a bagful of toys for Evan to open for his first Christmas. It wasn't home, but he was doing better, and we were grateful for that. We concentrated on learning all the things we would need to know... how to change his trach in an emergency, how to suction, change his ties on our own. That was a challenge I never dreamed we would be going through, but Carl and I breezed through it, with a certain amount of nervousness, it's true, but still.
December 30th- We finally got Evan on the home ventilator, just before he was 5 months old. His pulmonary hypertension was doing better. His heart was looking good, lungs looking better, and he was getting stronger and more playful.
Which brings us to January, when I started this blog. New year, and our baby boy is still in the hospital.
He continued to progress, doing better and better... and if you've read the rest of the blog, you're up to speed.
There's a lot of things that are probably left out of this synopsis.... all the trials, googling of symptoms and conditions, worries, fears, hopes... It's an incredible rollercoaster ride. Not one I recommend for anyone, but it DOES make a person realize the real joys of parenthood, and how precious every second is.
"Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice." "
---Erma Bombeck---
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