We ARE GOING HOME in less than a week!
We are set to have Evan released Tuesday April 3rd- He will finally be home after 8 months and 3 days in the hospital. The total? 248 days.
He will be coming home with a trach, feeding tube, oxygen, and a few medications and breathing treatments, as well as all the little things.
This weekend we'll be doing our final rooming in with all the equipment he's going home with.
Evan is ready. He's been doing so well with physical therapy- we're still working on speech therapy. He's playing a lot, which is so good to see.
We will be taking Evan for his first pediatrician check up the Wednesday after he's released. The next week, we'll be taking him for his physical therapy, speech therapy, etc, and should have him looked at by the people who check out his progress with the helmet.
So it's going to be busy- but how cool that we'll be home! :-)
I gotta go- Lots to do before that day comes. :-)
Wednesday, March 28, 2012
Tuesday, March 27, 2012
Evan is coming home soon, we hope
Okay, it's been pretty hectic lately, what with rooming in and just the day to day controlled chaos of our lives, so I haven't had much of a chance to post lately.
Evan has been off the ventilator for a week and a few days, and he's still doing wonderful. WE DON'T NEED NO STINKIN' VENT!
He's still on supplemental oxygen, but, hey, I'm okay with that for now.
He's sitting up really well. I see improvement daily.
The best news of all... we're talking about possibly coming home on April 3rd. That's a week from today!
His belly looks great, and Evan is ready. We're past ready. We're looking forward to taking this step.
We're seeing more and more "normal" behavior from Evan.... He loves to play with daddy and me, and will get so excited that he "runs" while he's lying down with this huge grin on his face. It's so adorable.
His head shape is looking great- the helmet is doing it's job, and I think we'll see it gone before his first birthday. Probably well before.
He's growing- he's at 18 pounds, and his length is pretty decent. His feet are huge.
HOME SOON!
Evan has been off the ventilator for a week and a few days, and he's still doing wonderful. WE DON'T NEED NO STINKIN' VENT!
He's still on supplemental oxygen, but, hey, I'm okay with that for now.
He's sitting up really well. I see improvement daily.
The best news of all... we're talking about possibly coming home on April 3rd. That's a week from today!
His belly looks great, and Evan is ready. We're past ready. We're looking forward to taking this step.
We're seeing more and more "normal" behavior from Evan.... He loves to play with daddy and me, and will get so excited that he "runs" while he's lying down with this huge grin on his face. It's so adorable.
His head shape is looking great- the helmet is doing it's job, and I think we'll see it gone before his first birthday. Probably well before.
He's growing- he's at 18 pounds, and his length is pretty decent. His feet are huge.
HOME SOON!
Sunday, March 18, 2012
Day 2 off the ventilator
Well, Evan is ROCKING this no ventilator thing. Which doesn't surprise me, because he is, after all, my Super Evan. :-)
His CO2 levels on his blood gas this morning was 39- which is thisclose to perfect.
Sooooo. We are so close to getting him home. A few things to get out of the way, and a little bit of time, and it's home AT LAST.
If we get out the day we're hoping, we will have spent nearly 250 days hospitalized. We've seen all four seasons- summer, fall, winter, and now spring. We've gone through Daylight Saving Time twice. We rang in a new year.
Holidays have gone by- Labor Day, Halloween, Thanksgiving, Christmas , New Year's, Valentine's Day, St Patrick's Day..... Easter is coming soon.
Did you know that by the end of this month, we'll only have 4 months to go until Evan is a year old? That's soon! I'm not sure what we'll do for his very first birthday, but I have to come up with something extra special.... After all, Evan is amazing, and I want to celebrate that.
Actually, we have a lot to celebrate- we have a beautiful son, who is extremely strong, a loving relationship between me and my husband, family, and most of all, we will celebrate Evan being home from now until eternity.
Taking him home doesn't end the hardships we may face in the future... It's not the end of our journey. We're just changing our venue. :-) BUT how wonderful to have him with us at all times. To be able to go to the park, or zoo, or, heck, even grocery shopping! To be able to see him playing or napping while I fold laundry.
To have him greet Daddy when he comes home from work.
To sit back and just BE together at home.
Most times when I think these things, I usually find myself a little panicked- not because of worry about my ability to handle Evan at home.... But because it just hurt too much to think about it.
Too often on this roller coaster ride, we've gotten our hopes up, only to have them plummet.
You teach yourself not to hope too much, by the end of it.
But when you feel that hope again, it just makes it so much sweeter. And to see those hopes realized... Well, I could almost go out into the hallway and start doing cartwheels.
His CO2 levels on his blood gas this morning was 39- which is thisclose to perfect.
Sooooo. We are so close to getting him home. A few things to get out of the way, and a little bit of time, and it's home AT LAST.
If we get out the day we're hoping, we will have spent nearly 250 days hospitalized. We've seen all four seasons- summer, fall, winter, and now spring. We've gone through Daylight Saving Time twice. We rang in a new year.
Holidays have gone by- Labor Day, Halloween, Thanksgiving, Christmas , New Year's, Valentine's Day, St Patrick's Day..... Easter is coming soon.
Did you know that by the end of this month, we'll only have 4 months to go until Evan is a year old? That's soon! I'm not sure what we'll do for his very first birthday, but I have to come up with something extra special.... After all, Evan is amazing, and I want to celebrate that.
Actually, we have a lot to celebrate- we have a beautiful son, who is extremely strong, a loving relationship between me and my husband, family, and most of all, we will celebrate Evan being home from now until eternity.
Taking him home doesn't end the hardships we may face in the future... It's not the end of our journey. We're just changing our venue. :-) BUT how wonderful to have him with us at all times. To be able to go to the park, or zoo, or, heck, even grocery shopping! To be able to see him playing or napping while I fold laundry.
To have him greet Daddy when he comes home from work.
To sit back and just BE together at home.
Most times when I think these things, I usually find myself a little panicked- not because of worry about my ability to handle Evan at home.... But because it just hurt too much to think about it.
Too often on this roller coaster ride, we've gotten our hopes up, only to have them plummet.
You teach yourself not to hope too much, by the end of it.
But when you feel that hope again, it just makes it so much sweeter. And to see those hopes realized... Well, I could almost go out into the hallway and start doing cartwheels.
Wednesday, March 14, 2012
18 hours off the ventilator
After so much waiting, it's hard to believe that the ball is rolling quite as fast as it seems to be. We will be bringing Evan home in a matter of weeks. WEEKS!
Today, Evan was off the ventilator for 18 hours. He's just so fantastic.
Friday is the BIG day this week, with us taking him off the ventilator for a full 24 hours, and saying "BUH-BYE!" to it for good.
We still have to do a rooming in, which we plan on doing right before he's scheduled to come home.
But we're getting so close I can taste it.
We had a decent day today... Evan was a bit irritable this morning, so he spent the morning snoozing on his favorite mattress- Momma.
But the afternoon, he was all smiles. We did some physical therapy, and played, talked, and had a generally good time. He also had an eye examination to follow up on the possiblity of cortical visual impairment, and the doc was encouraged at the difference he sees in Evan now as compared to his initial exam. We'll be doing another follow up when Evan is a year.
EXCITED!
Today, Evan was off the ventilator for 18 hours. He's just so fantastic.
Friday is the BIG day this week, with us taking him off the ventilator for a full 24 hours, and saying "BUH-BYE!" to it for good.
We still have to do a rooming in, which we plan on doing right before he's scheduled to come home.
But we're getting so close I can taste it.
 |
| Evan says "I'm happy about getting to go home soon!" |
 |
| Kisses for Daddy- Too sweet NOT to share! |
But the afternoon, he was all smiles. We did some physical therapy, and played, talked, and had a generally good time. He also had an eye examination to follow up on the possiblity of cortical visual impairment, and the doc was encouraged at the difference he sees in Evan now as compared to his initial exam. We'll be doing another follow up when Evan is a year.
EXCITED!
Sunday, March 11, 2012
Unexpected progress is the sweetest
Yesterday was such an interesting day.
It was a rainy day- dreary, cloudy, and cold. Evan napped quite a bit, and we got some really good snuggle time.
And Evan seemed to make a sudden breakthrough- We've been working on his physical therapy, which includes putting Evan into positions he would have normally been able to master if he hadn't been bed-ridden for so long. We work on sitting, tummy time, pushing up with his legs when we're holding him on the playmat, positioning his hips so he's not so "frog-legged", etc.
I figured yesterday was a good day to pull out the playmat and work with him. He did really great with pushing up with his legs, he sat up really well. And it was like seeing the wheels actually moving in his mind.... he started reaching for things while we were supporting him sitting. And after trying that, he got so excited and began using his hands to slap his knees and wave them around.
This might not seem like a big deal to anyone else..... OF COURSE a 7 month old baby will do that, right? But that is something that has been missing from Evan's play until now. He would usually keep his arms either loose, or hold onto something, even while playing on his back.
He's getting coordinated. That's a little step, but it's so cool to me.
And he did another thing that absolutely blew me away. We were snuggling, just looking at eachother, and I was talking to him. And he grabbed the top of my shirt, which he's been doing for months. I was waring a cowl-neck shirt (a shirt with a loose amount of fabric at the neck) and he pulled the extra fabric up over my mouth. :-) It was the cutest thing. He's interacting with his environment more, becoming more visually curious, and experimenting with his environment. I love it.
It may seem like such a small thing, but seeing this little bit of progress is just so exciting to me.
Last thought- Here is a link to a story about a mother with a child with special needs, telling others what they might not know about being a parent to a special needs child. I thought it was spot-on.
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
It was a rainy day- dreary, cloudy, and cold. Evan napped quite a bit, and we got some really good snuggle time.
And Evan seemed to make a sudden breakthrough- We've been working on his physical therapy, which includes putting Evan into positions he would have normally been able to master if he hadn't been bed-ridden for so long. We work on sitting, tummy time, pushing up with his legs when we're holding him on the playmat, positioning his hips so he's not so "frog-legged", etc.
I figured yesterday was a good day to pull out the playmat and work with him. He did really great with pushing up with his legs, he sat up really well. And it was like seeing the wheels actually moving in his mind.... he started reaching for things while we were supporting him sitting. And after trying that, he got so excited and began using his hands to slap his knees and wave them around.
This might not seem like a big deal to anyone else..... OF COURSE a 7 month old baby will do that, right? But that is something that has been missing from Evan's play until now. He would usually keep his arms either loose, or hold onto something, even while playing on his back.
He's getting coordinated. That's a little step, but it's so cool to me.
And he did another thing that absolutely blew me away. We were snuggling, just looking at eachother, and I was talking to him. And he grabbed the top of my shirt, which he's been doing for months. I was waring a cowl-neck shirt (a shirt with a loose amount of fabric at the neck) and he pulled the extra fabric up over my mouth. :-) It was the cutest thing. He's interacting with his environment more, becoming more visually curious, and experimenting with his environment. I love it.
It may seem like such a small thing, but seeing this little bit of progress is just so exciting to me.
Last thought- Here is a link to a story about a mother with a child with special needs, telling others what they might not know about being a parent to a special needs child. I thought it was spot-on.
http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html
Saturday, March 10, 2012
15 hours off the vent
Evan is still doing so well with the weaning off the ventilator- we're at 15 hours as of yesterday, and if we continue to do well, we'll see him at 18 hours by the 15th.
I still have my fingers crossed. Although we're just about a week from seeing him POSSIBLY coming off the ventilator entirely, I find myself trying not to get excited. It's a matter of not expecting too much because I don't want to be disappointed.
Still, I would be remiss if I didn't at least PLAN for the best- If we get to 18 hours on the 15th, we'll try 24 hours two days after. If he does well at 24 hours, we will keep him off the ventilator and monitor him to make sure he's still doing well every day.
IF all goes well, we will continue on for a week or possibly two off the ventilator, and we'll see Evan coming home by March 31st.
We will be rooming in twice for 48 hours each time. I have his pediatrician picked out, and a home health care provider chosen to receive nursing care for Evan.
Monday, we're scheduled to have Evan's doctor to look at his upper airway- it's a standard thing because he has a trach, and as the doctor explained to me, scar tissue can develop in his airway making it more difficult for him to breathe without the trach. The scar tissue can be removed, close to the time we're looking at removing the trach...... which MIGHT be this summer. :-) If it's gone before his 1st birthday, I'm going to be one happy momma.
Honestly, though, we'll just be glad for him to be home, under any circumstances.
I still have my fingers crossed. Although we're just about a week from seeing him POSSIBLY coming off the ventilator entirely, I find myself trying not to get excited. It's a matter of not expecting too much because I don't want to be disappointed.
Still, I would be remiss if I didn't at least PLAN for the best- If we get to 18 hours on the 15th, we'll try 24 hours two days after. If he does well at 24 hours, we will keep him off the ventilator and monitor him to make sure he's still doing well every day.
IF all goes well, we will continue on for a week or possibly two off the ventilator, and we'll see Evan coming home by March 31st.
We will be rooming in twice for 48 hours each time. I have his pediatrician picked out, and a home health care provider chosen to receive nursing care for Evan.
Monday, we're scheduled to have Evan's doctor to look at his upper airway- it's a standard thing because he has a trach, and as the doctor explained to me, scar tissue can develop in his airway making it more difficult for him to breathe without the trach. The scar tissue can be removed, close to the time we're looking at removing the trach...... which MIGHT be this summer. :-) If it's gone before his 1st birthday, I'm going to be one happy momma.
Honestly, though, we'll just be glad for him to be home, under any circumstances.
Wednesday, March 7, 2012
A Look back at Evan- Months 2-5 in the Hospital
I've been promising myself that I'll post the remainder about Evan's first 6 months prior to starting this blog for quite a while now. I guess it's time to make good on promises to myself. :-)
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.
Poor baby was just not feeling well at all. His breathing was labored, and he was working so very hard just to breathe... it took all his energy.
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.
I was so sad to see my precious boy back on that machine, with a tube coming out of his mouth. His CO2 levels were so high- around 80%.... which is pretty bad, for those who don't know. The next few weeks were just all about waiting to see how he did. We just didn't really see a lot of progress, and it was nerve-wracking.
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.
So here's a last thought from the very wise Erma Bombeck. It's been shared on our support site, and I never fail to tear up while reading it:
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---
Sunday, March 4, 2012
12 hours off the vent
Well, this past week, we've hit both "normal" milestones and "Evan" milestones.
1.) We are now at 12 hours a day off the ventilator. Again, our goal is 18 hours off. We reduce the time by an hour every other day, so about 12 days from now we'll be there! He's doing fantastic.
2.) Evan's first lil' tooth is coming in! I have to admit, this particular milestone had me a little emotional. I had hoped that we would be home by this time. My sweet baby is getting bigger and progressing in so many areas, and it's bittersweet. I love seeing progress, but at the same time, I am sad to have missed out on the "normal" way of things. For many moms, teething is a pain (no pun intended), potty training is a nightmare, and the "I must discover all the hazardous things in this house within 2 hours" stage is flat-out an inducement for pulling out her own hair. But for me, it's really a wonder. It's a reminder that we're incredibly lucky Evan will be able to do those "normal" things.
3.) Evan is getting good at rolling over. There's been many times in the past week that we've come in to find him on his belly.
1.) We are now at 12 hours a day off the ventilator. Again, our goal is 18 hours off. We reduce the time by an hour every other day, so about 12 days from now we'll be there! He's doing fantastic.
2.) Evan's first lil' tooth is coming in! I have to admit, this particular milestone had me a little emotional. I had hoped that we would be home by this time. My sweet baby is getting bigger and progressing in so many areas, and it's bittersweet. I love seeing progress, but at the same time, I am sad to have missed out on the "normal" way of things. For many moms, teething is a pain (no pun intended), potty training is a nightmare, and the "I must discover all the hazardous things in this house within 2 hours" stage is flat-out an inducement for pulling out her own hair. But for me, it's really a wonder. It's a reminder that we're incredibly lucky Evan will be able to do those "normal" things.
3.) Evan is getting good at rolling over. There's been many times in the past week that we've come in to find him on his belly.
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