She's home. She didn't come home the week I predicted in my last post... there was weight to be gained and they went up very (excruciatingly) slow on the feeds. Everyone was nervous about going too fast on anything.
She got discharged on September 2nd. Exactly two months from the date of her first surgery. We were ecstatic! We put her in the car, she looked so small in that car seat. She fell right asleep on the drive home... funny, I always drove home from the hospital thinking about what it would be like to take her home for the first time and I honestly can't remember that drive now. We got home and introduced her to her fuzzy cat-brother, Tucker. Walked her around the house, unpacked all her stuff....
and then what?
We were home with a baby and didn't know what to do with her! We eventually figured it out, but has taken me about 6 weeks to get a routine down with her. I didn't know anything about babies, here I was with a 2 month old coming home for the first time and feeling like a brand-new mommy.
There were lots of fights. Me and Avie, Avie and Daddy, Daddy and I (a lot). I didn't want help because I was determined to "do this on my own". But what I didn't realize was that it felt like having a newborn at home for the first time... but this was harder because she didn't sleep all day. I was shuttling her back and forth to the doctors for check up appointments and learning the hard way that babies her age need sleep schedules, and tummy time.
So, I now have regular help (my Mom) and Avie's got her nap schedule. The sanity has returned to the house-hold! Well, for the most-part.
Now I get to worry about all the stuff that other Mommies worry about (aside from the additional CF crap, that is). Like breastfeeding, gas, sleeping through the night, outgrowing clothes but not quite fitting into the next size up and teething??
And I gotta be honest, being a Mom is the hardest job I've ever had!
Tuesday, October 27, 2015
Thursday, August 13, 2015
The final countdown...?
Avie's replogle tube came out yesterday. So, that means the plan is to start feeing her today... assuming her little body was able to handle the bile, spit and air that naturally accumulates in the tummy and is usually sent "down stream" if you will.
This is on account of her getting rid of the contrast, finally. The rectal irrigations proved helpful- though I don't know if she NEEDS them in order to poop. I've seen her do it on her own, and I've heard her tooting also. But the plan will be to continue the irrigating while we are working her up to full feeds and then slowly back off, once she is getting enzymes again... the enzymes should take over for the irrigations on the 'breakdown and expel' front.
Today, we start with clear liquids to see how she does. This won't come out as stool, but the thing we are watching for is her tummy distension. If she eats the clear stuff, keeps it down and her stomach doesn't swell- then we know it's passed into the bowels as it should. The next step will be some combination of breast milk and formula given in small doses at first, then gradually increasing until she is at 'full feed' and pooping on her own.
Then she can come home.
Mr. Pluck and I are trying not to get our hopes up, while staying positive at the same time. It's a tough thing to do. We are a little nervous about increasing her feeds too soon because of what happened last time, but we are both anxious to get her home. I don't want to put a date on her discharge because that would be getting my hopes up- but the logical side of me (albeit a small part that doesn't usually speak up) is just counting the possible number of days...
Clear today, the real stuff tomorrow. Increasing by 5ml every 6 hours... we would get to 80ml in about 4-5 days depending on what time of day they start... and if they hold the amount anywhere in the middle for any reason. That would put us at about middle of the week, next week.
... but again, I'm not getting my hopes up. But I do need to make sure we are ready for her: wash the new baby clothes, pack her coming home outfit/bag, install and check the car seat, dust and vacuum the nursery...
I should probably get started.
This is on account of her getting rid of the contrast, finally. The rectal irrigations proved helpful- though I don't know if she NEEDS them in order to poop. I've seen her do it on her own, and I've heard her tooting also. But the plan will be to continue the irrigating while we are working her up to full feeds and then slowly back off, once she is getting enzymes again... the enzymes should take over for the irrigations on the 'breakdown and expel' front.
Today, we start with clear liquids to see how she does. This won't come out as stool, but the thing we are watching for is her tummy distension. If she eats the clear stuff, keeps it down and her stomach doesn't swell- then we know it's passed into the bowels as it should. The next step will be some combination of breast milk and formula given in small doses at first, then gradually increasing until she is at 'full feed' and pooping on her own.
Then she can come home.
Mr. Pluck and I are trying not to get our hopes up, while staying positive at the same time. It's a tough thing to do. We are a little nervous about increasing her feeds too soon because of what happened last time, but we are both anxious to get her home. I don't want to put a date on her discharge because that would be getting my hopes up- but the logical side of me (albeit a small part that doesn't usually speak up) is just counting the possible number of days...
Clear today, the real stuff tomorrow. Increasing by 5ml every 6 hours... we would get to 80ml in about 4-5 days depending on what time of day they start... and if they hold the amount anywhere in the middle for any reason. That would put us at about middle of the week, next week.
... but again, I'm not getting my hopes up. But I do need to make sure we are ready for her: wash the new baby clothes, pack her coming home outfit/bag, install and check the car seat, dust and vacuum the nursery...
I should probably get started.
Thursday, August 6, 2015
Even strong Moms have weak moments
Okay, so my last post was a little depressing. I think I'm allowed some days like that, this isn't an easy process. Let me just say that I realized it and turned my attitude around the very next day. I made sure Avie heard the positivity in my voice and that I kept my thoughts positive.
The next night, Avie had two green stool smears in her diaper! The surgeon was thrilled and scheduled a contrast study. We've done these before she was reanastomosed (put back together) by injecting the contrast into the stoma that we were flushing. But, since she no longer has stomas, the contrast was put into her tummy via a tube in her nose. Like the replogle, but not on suction obviously.
Then we watched it make its way through her intestines by taking x-rays every few hours. I'm please to say that it's still progressing through her system. So far, everyone is happy that it's moving and there are no concerns at this point about the speed at which it is traveling through.
I had a good feeling about this study when we started it. I told my husband that I knew something good was coming out of this and that we were going to get good news from this study.
She hasn't pooped the contrast out yet, but I have heard her fart... which means that the contrast is pushing out some of the gas that made her belly swell up.
So things on the medical front are improving!
On the "I have a baby" side of things, Avie smiled for the first time! The day after our 'birthdays' she smiled. It happened as I was changing her diaper for the first time (I had helped the nurses before, but they had to fold the diaper in a certain way at the top to avoid hitting the ileostomy- so I never completed the full process). My husband was talking to her and taking pictures when she looked right at him and grinned. We were both frozen with joy... and I was almost weak in the knees!
What's next?? Walking?!
The next night, Avie had two green stool smears in her diaper! The surgeon was thrilled and scheduled a contrast study. We've done these before she was reanastomosed (put back together) by injecting the contrast into the stoma that we were flushing. But, since she no longer has stomas, the contrast was put into her tummy via a tube in her nose. Like the replogle, but not on suction obviously.
Then we watched it make its way through her intestines by taking x-rays every few hours. I'm please to say that it's still progressing through her system. So far, everyone is happy that it's moving and there are no concerns at this point about the speed at which it is traveling through.
I had a good feeling about this study when we started it. I told my husband that I knew something good was coming out of this and that we were going to get good news from this study.
She hasn't pooped the contrast out yet, but I have heard her fart... which means that the contrast is pushing out some of the gas that made her belly swell up.
So things on the medical front are improving!
On the "I have a baby" side of things, Avie smiled for the first time! The day after our 'birthdays' she smiled. It happened as I was changing her diaper for the first time (I had helped the nurses before, but they had to fold the diaper in a certain way at the top to avoid hitting the ileostomy- so I never completed the full process). My husband was talking to her and taking pictures when she looked right at him and grinned. We were both frozen with joy... and I was almost weak in the knees!
What's next?? Walking?!
Friday, July 31, 2015
30
Yesterday was my 30th birthday. It was also Avie's 30 day old birthday.
Yup, my little breath of life is a month old already. She is still in the NICU, with no projected date of when she will come home. We had to stop feeding her and put the suction tube back in her nose (replogle tube).
Her tummy got distended because we were feeding her, but nothing was coming out her bottom. The surgeons think we might have started feeding her too soon. Even though she showed all the signs of being ready to eat, they think the suture site in her intestines is too swollen to let the waste pass through.
The milk was digested in the stomach and then passed to the intestines- but just got stuck in there at a point. I hate the thought that we shoved the bottle in her mouth every 3 hours and she ate it because she didn't know any better. My beautiful, helpless child.
I have nothing witty or creative to say. I'm numb... I don't know if this is because she is a month old already, because I'm 30, because she isn't home yet... we are at a standstill or because it seems we attempted to make foie gras with my baby.
Once again, we are waiting for poop. "Wait and see" has to be my least favorite phrase in the world now. What's happening while we are waiting? What is my baby feeling? What is she thinking? How long do we wait... and THEN what??
I want her home so badly that I'm choking on it. The thought is a lump in my throat and a pain in my chest. My whole body aches to hold her at home, to dress her, to change her, bathe her, nap with her. This must be that fierce love that I've heard mothers talk about.
I want nothing more than for her to be functioning and healthy. Literally, nothing. I spent my 30th birthday watching her sleep, talking to doctors, staring into space while my Mom sat by quietly and crying in my husband's arms... so this is my 'golden year', huh?
Let's hope it turns around really damn quick.
Shit, maybe it's my attitude that needs to turn around.
This isn't about me, I know... I'm a wobbly puddle of nerve-less mush... she is a bright-eyed bundle of wiggly tininess. She needs positive vibes and I'm not providing her with much of that. I'm yearning, worried and depressed. Maybe I should stay away for a day so I don't pollute her little room with my fog? But not seeing her for a day would literally kill me.
The headlines would read, 'New mother dies at 30 of a broken heart, missed her baby's homecoming'.
Yup, my little breath of life is a month old already. She is still in the NICU, with no projected date of when she will come home. We had to stop feeding her and put the suction tube back in her nose (replogle tube).
Her tummy got distended because we were feeding her, but nothing was coming out her bottom. The surgeons think we might have started feeding her too soon. Even though she showed all the signs of being ready to eat, they think the suture site in her intestines is too swollen to let the waste pass through.
The milk was digested in the stomach and then passed to the intestines- but just got stuck in there at a point. I hate the thought that we shoved the bottle in her mouth every 3 hours and she ate it because she didn't know any better. My beautiful, helpless child.
I have nothing witty or creative to say. I'm numb... I don't know if this is because she is a month old already, because I'm 30, because she isn't home yet... we are at a standstill or because it seems we attempted to make foie gras with my baby.
Once again, we are waiting for poop. "Wait and see" has to be my least favorite phrase in the world now. What's happening while we are waiting? What is my baby feeling? What is she thinking? How long do we wait... and THEN what??
I want her home so badly that I'm choking on it. The thought is a lump in my throat and a pain in my chest. My whole body aches to hold her at home, to dress her, to change her, bathe her, nap with her. This must be that fierce love that I've heard mothers talk about.
I want nothing more than for her to be functioning and healthy. Literally, nothing. I spent my 30th birthday watching her sleep, talking to doctors, staring into space while my Mom sat by quietly and crying in my husband's arms... so this is my 'golden year', huh?
Let's hope it turns around really damn quick.
Shit, maybe it's my attitude that needs to turn around.
This isn't about me, I know... I'm a wobbly puddle of nerve-less mush... she is a bright-eyed bundle of wiggly tininess. She needs positive vibes and I'm not providing her with much of that. I'm yearning, worried and depressed. Maybe I should stay away for a day so I don't pollute her little room with my fog? But not seeing her for a day would literally kill me.
The headlines would read, 'New mother dies at 30 of a broken heart, missed her baby's homecoming'.
Friday, July 24, 2015
20?? More like, 2!
Avie had surgery two days ago. The surgeon was so happy with everything. He said the surgery went smoothly, the distal bowels were completely empty and he was able to stitch her right back up without any complications.
A little while later, she was back in her NICU room, coming down off the anesthesia. She had all those damn tubs back in. Luckily, the oxygen tube came out a couple hours later and she was breathing on her own. Even though she was asleep and still "out of it" from the surgery, she was squeezing the crap out of our fingers with her little hand.
The recovery process from this is going to be similar to her last surgery. There is a replogle tube sucking bile out of her tummy and her bowels have to wake up before she can eat. They will start her on small amounts of food and keep a close eye to make sure it's passing through as it should. Then they increase the food in small amounts, very slowly, until she is up to full feedings. After that, it's just messing with her 'diet' to make sure she is maintaining weight gain and has the right amount of fat, salt, etc. This part will be what we take home with us as her daily recipe- her CF meal plan if you will.
The good news so far is that the bile coming out of her tummy is clear already. It actually was never green (if you recall from the first surgery, this bile started out as a dark green and we needed it to be clear- meaning the bowels were awake). The nurses and doctors are also hearing "bowel sounds" when they listen to her stomach. This is good because it obviously means that things are waking up down there. The surgeon told us that the first thing to go through her bowels will be gas... and boy did the nurse and I smell it yesterday! My little sewer pipe*
The surgeon also said that it takes some kids up to 20 days for the bowels to wake up before they can eat.... so, Avie is kicking ass with this farty, gurgle, clear bile thing just the day after surgery!
I'm excited to see what today brings! It might just be moving her replogle tube off suction and to using gravity alone... then feeding should happen soon! My little girl is a Firecracker and she is ready to blow this popsicle stand!
*When the nurse would flush her mucus fistula (the stoma that connected to the distal bowel), we would smell an eggy gas coming out of the stoma. I called it her sewer pipe, because that's what it smelled like. Stinky girl!
A little while later, she was back in her NICU room, coming down off the anesthesia. She had all those damn tubs back in. Luckily, the oxygen tube came out a couple hours later and she was breathing on her own. Even though she was asleep and still "out of it" from the surgery, she was squeezing the crap out of our fingers with her little hand.
The recovery process from this is going to be similar to her last surgery. There is a replogle tube sucking bile out of her tummy and her bowels have to wake up before she can eat. They will start her on small amounts of food and keep a close eye to make sure it's passing through as it should. Then they increase the food in small amounts, very slowly, until she is up to full feedings. After that, it's just messing with her 'diet' to make sure she is maintaining weight gain and has the right amount of fat, salt, etc. This part will be what we take home with us as her daily recipe- her CF meal plan if you will.
The good news so far is that the bile coming out of her tummy is clear already. It actually was never green (if you recall from the first surgery, this bile started out as a dark green and we needed it to be clear- meaning the bowels were awake). The nurses and doctors are also hearing "bowel sounds" when they listen to her stomach. This is good because it obviously means that things are waking up down there. The surgeon told us that the first thing to go through her bowels will be gas... and boy did the nurse and I smell it yesterday! My little sewer pipe*
The surgeon also said that it takes some kids up to 20 days for the bowels to wake up before they can eat.... so, Avie is kicking ass with this farty, gurgle, clear bile thing just the day after surgery!
I'm excited to see what today brings! It might just be moving her replogle tube off suction and to using gravity alone... then feeding should happen soon! My little girl is a Firecracker and she is ready to blow this popsicle stand!
*When the nurse would flush her mucus fistula (the stoma that connected to the distal bowel), we would smell an eggy gas coming out of the stoma. I called it her sewer pipe, because that's what it smelled like. Stinky girl!
Monday, July 13, 2015
breakdowns
Avie is 13 days old now... I can't believe nearly two weeks have passed since her arrival into this world. And what a world she is in.
Still in the NICU and only experiencing her small box of a room so far, I have to remind myself that she won't remember these things once I get her home. The most excitement she has gotten is when she was wheeled down to get an x-ray. I watched her eyes as they caught the light from the passing windows. She was enthralled with the change of scenery... until we had to hold her down on the x-ray machine. I hated that moment, but I didn't want to cry in front of the technicians and nurses. I knew Avie would want to feel my strength, not my sorrow.
Things have moved slow and steady for her the last 9 days. She has been taken off the IV and allowed to eat. She gets what little breast milk I can provide and formula substitution for the rest with some rice cereal mixed in for added bulk. The rice cereal is supposed to prevent her from 'dumping' all the food into her ostomy bag. Dumping means that everything going in is coming out, and that she isn't absorbing the nutrients. She also gets enzymes mixed with applesauce (the enzymes will be something she needs for the rest of her life. It's obvious that the Cystic Fibrosis has caused issues in her GI tract... only the future will tell if she has this much trouble with her lungs, too). Big food for such a small girl!
A small girl who is so brave.
After her last x-ray, the surgeon came in to talk to me. He said she was doing well and that the x-ray showed that the distal (lower) bowel has started to open up and that the treatments are breaking down the meconium blockage. While we were still waiting for lots of poopie diapers to tell us that the blockage had completely cleared, it seemed like the surgeon was pretty satisfied so far. At this point, she had gotten a few little 'nuggets' out into her diaper.
The surgeon gave me an approximate timeframe of when we might expect her second surgery to be discussed... which would be next week. It made me feel happy to hear him say that it could potentially be so soon. The thought of having her home gives me insane joy. I daydream about waking up to her cries in the middle of the night and bouncing her around the house. Dressing her in her adorable clothes and not accomplishing a thing all day. Lord, just make it so!
Then I have a complete meltdown.
I am sure it's hormones. I've been told by the nurses that it happens all the time and every new Mom cries, whether the baby is home or not. I think I just hate that she is still at the hospital, and I'm not sure when she will be home where she belongs... regardless of what the surgeon says. I see her every day. The whole staff knows me and they are all so sweet. They check in on Avie periodically and tell me how beautiful she is. I am sure they are telling the truth (because she is absolutely adorable) but I also think they are trying to keep my spirits up. Nobody wants me to break again, especially me.
While next week still seems so far away, I know I just have to keep my head up and stay strong for her. I have to focus on the positive improvements she has made... and while that can be hard most days, today should be different...
She had a large poop in her diaper last night!
Still in the NICU and only experiencing her small box of a room so far, I have to remind myself that she won't remember these things once I get her home. The most excitement she has gotten is when she was wheeled down to get an x-ray. I watched her eyes as they caught the light from the passing windows. She was enthralled with the change of scenery... until we had to hold her down on the x-ray machine. I hated that moment, but I didn't want to cry in front of the technicians and nurses. I knew Avie would want to feel my strength, not my sorrow.
Things have moved slow and steady for her the last 9 days. She has been taken off the IV and allowed to eat. She gets what little breast milk I can provide and formula substitution for the rest with some rice cereal mixed in for added bulk. The rice cereal is supposed to prevent her from 'dumping' all the food into her ostomy bag. Dumping means that everything going in is coming out, and that she isn't absorbing the nutrients. She also gets enzymes mixed with applesauce (the enzymes will be something she needs for the rest of her life. It's obvious that the Cystic Fibrosis has caused issues in her GI tract... only the future will tell if she has this much trouble with her lungs, too). Big food for such a small girl!
A small girl who is so brave.
After her last x-ray, the surgeon came in to talk to me. He said she was doing well and that the x-ray showed that the distal (lower) bowel has started to open up and that the treatments are breaking down the meconium blockage. While we were still waiting for lots of poopie diapers to tell us that the blockage had completely cleared, it seemed like the surgeon was pretty satisfied so far. At this point, she had gotten a few little 'nuggets' out into her diaper.
The surgeon gave me an approximate timeframe of when we might expect her second surgery to be discussed... which would be next week. It made me feel happy to hear him say that it could potentially be so soon. The thought of having her home gives me insane joy. I daydream about waking up to her cries in the middle of the night and bouncing her around the house. Dressing her in her adorable clothes and not accomplishing a thing all day. Lord, just make it so!
Then I have a complete meltdown.
I am sure it's hormones. I've been told by the nurses that it happens all the time and every new Mom cries, whether the baby is home or not. I think I just hate that she is still at the hospital, and I'm not sure when she will be home where she belongs... regardless of what the surgeon says. I see her every day. The whole staff knows me and they are all so sweet. They check in on Avie periodically and tell me how beautiful she is. I am sure they are telling the truth (because she is absolutely adorable) but I also think they are trying to keep my spirits up. Nobody wants me to break again, especially me.
While next week still seems so far away, I know I just have to keep my head up and stay strong for her. I have to focus on the positive improvements she has made... and while that can be hard most days, today should be different...
She had a large poop in her diaper last night!
Sunday, July 5, 2015
Breath of Life
My baby girl was born on Tuesday, June 30th at 9:17pm. Her name is Avie and I'm completely in love with her. The delivery was long and brutal and after nearly 4 hours of pushing, she finally arrived. My Mom dubbed her 'a little firecracker' when announcing her birth to friends and family.
My labor was induced a day before my due date because the doctors didn't want to risk her coming late. If she was too close to the 4th of July holiday, it would be harder to get her surgery scheduled when and if she needed it.
So she came on Tuesday, and had surgery two days later, on Thursday, July 2nd. Her first day of life was rough on everyone. I got to hold her once on Wednesday, in the NICU of my hospital before she was transferred to the Children's hospital. My husband went with her when she was transferred and he spent the day with her tiny hand clutching his pinky while doctors poked and prodded at her. He broke down about it later that night, as he described the procedures and how she wouldn't let his pinky go. We were back in my room at the hospital then, where I felt like a prisoner, held away from my baby.
Those procedures were necessary evils, and the very next day she was getting wheeled away from us to the operating room. I had my discharge papers signed with just enough time to get to Children's hospital and touch her hand before they took her back. Thank God for family and friends providing distraction during the operation.
It was in the waiting room where we unveiled her name for the first time. Everyone cried together when we told them the reason for choosing that name was the meaning of it, "beautiful breath of life".
And man, is she beautiful.
The surgery went well, but it is going to be 1 of 2 (with the second surgery meant to 'put her all back together'). As suspected, there was a severe bowel blockage in her small intestine. Luckily though, there weren't any ruptures or twists and all of the organs were pink and healthy. The surgeon tried to clear the blockage but decided that trying to clear it would take hours under anesthesia and would damage her intestine. Instead, he cut the intestine at the top of the blockage and pulled both ends up through her stomach, one on either side of her belly button.
The intestine on the right side of her belly button has an ostomy bag over it. This is where the waste will be distributed from anything she eats (which she isn't allowed to do yet- but she is on an IV, providing nutrients). The intestine on the left side of her belly button has a catheter sewn into it. The nurses are injecting enzymes into this catheter with the hope that it will clear the blockage and eventually the Meconium will pass into her diaper. There is a tube coming from her stomach and up through her nose, that is suctioning out all the stuff that she's swallowed and that her body has naturally produced. Since things weren't moving through her system, this 'waste' was building up in her tummy and making her belly swell up. The fluid from her tummy tube needs to run clear, with the 'waste' being deposited into the ostomy bag, before we can feed her.
At first, that tube was pulling up a dark green fluid from her tummy and the ostomy bag was only collecting blood. The enzymes being injected into her other side, were pooling in the catheter and dripping out around the syringe... nobody was sure how much, if any, was actually getting INTO her intestine. Meanwhile, I struggled at home to get colostrum running, knowing that was the only thing I could do for my baby girl right now.
Yesterday, on July 4th (4 days after her birth, and 2 days after surgery), I finally collected 2ml of colostrum. It was a small amount, but it made me so happy. When we got to the NICU to visit her, we were told that the fluid in the tube from her tummy was running a lighter green color- another positive. The nurse then filled a syringe with enzymes, as she described to us how it was still pooling and where it would leak. She positioned the syringe and pushed the plunger... and to our surprise, the syringe emptied. We held our breath and searched for drops and leaks and what we found was dark brown meconium coming up the intestine, around the catheter. The nurse was ecstatic. She said, even though the meconium was coming up- instead of down into the diaper- it meant that the enzymes had finally gotten through to the top of the blockage and were beginning to do their job of breaking it down. Then I got to hold my baby and swab her mouth with colostrum. She can't eat it right now, but her mouth will absorb the important nutrients it provides and this will only help her organs function.
We were on a high! Leaving the hospital that afternoon, I was the happiest I had been since her birth. We spread the good news around to our families and everyone sent pictures of their July 4th cocktails as a cheers and an ode to Avie's successful day. That evening, we ended the night with our ritual phone call to check on our baby girl.
"Guess what, guys," said the night nurse, "there is some green waste coming into the ostomy bag. This means the intestines are starting to wake up and function, taking the waste from her tummy down through her bowels like they should."
As I ended the phone call with a hearty, "Happy 4th of July!" I heard the fireworks going off in the background.
Fireworks for our Firecracker.
My labor was induced a day before my due date because the doctors didn't want to risk her coming late. If she was too close to the 4th of July holiday, it would be harder to get her surgery scheduled when and if she needed it.
So she came on Tuesday, and had surgery two days later, on Thursday, July 2nd. Her first day of life was rough on everyone. I got to hold her once on Wednesday, in the NICU of my hospital before she was transferred to the Children's hospital. My husband went with her when she was transferred and he spent the day with her tiny hand clutching his pinky while doctors poked and prodded at her. He broke down about it later that night, as he described the procedures and how she wouldn't let his pinky go. We were back in my room at the hospital then, where I felt like a prisoner, held away from my baby.
Those procedures were necessary evils, and the very next day she was getting wheeled away from us to the operating room. I had my discharge papers signed with just enough time to get to Children's hospital and touch her hand before they took her back. Thank God for family and friends providing distraction during the operation.
It was in the waiting room where we unveiled her name for the first time. Everyone cried together when we told them the reason for choosing that name was the meaning of it, "beautiful breath of life".
And man, is she beautiful.
The surgery went well, but it is going to be 1 of 2 (with the second surgery meant to 'put her all back together'). As suspected, there was a severe bowel blockage in her small intestine. Luckily though, there weren't any ruptures or twists and all of the organs were pink and healthy. The surgeon tried to clear the blockage but decided that trying to clear it would take hours under anesthesia and would damage her intestine. Instead, he cut the intestine at the top of the blockage and pulled both ends up through her stomach, one on either side of her belly button.
The intestine on the right side of her belly button has an ostomy bag over it. This is where the waste will be distributed from anything she eats (which she isn't allowed to do yet- but she is on an IV, providing nutrients). The intestine on the left side of her belly button has a catheter sewn into it. The nurses are injecting enzymes into this catheter with the hope that it will clear the blockage and eventually the Meconium will pass into her diaper. There is a tube coming from her stomach and up through her nose, that is suctioning out all the stuff that she's swallowed and that her body has naturally produced. Since things weren't moving through her system, this 'waste' was building up in her tummy and making her belly swell up. The fluid from her tummy tube needs to run clear, with the 'waste' being deposited into the ostomy bag, before we can feed her.
At first, that tube was pulling up a dark green fluid from her tummy and the ostomy bag was only collecting blood. The enzymes being injected into her other side, were pooling in the catheter and dripping out around the syringe... nobody was sure how much, if any, was actually getting INTO her intestine. Meanwhile, I struggled at home to get colostrum running, knowing that was the only thing I could do for my baby girl right now.
Yesterday, on July 4th (4 days after her birth, and 2 days after surgery), I finally collected 2ml of colostrum. It was a small amount, but it made me so happy. When we got to the NICU to visit her, we were told that the fluid in the tube from her tummy was running a lighter green color- another positive. The nurse then filled a syringe with enzymes, as she described to us how it was still pooling and where it would leak. She positioned the syringe and pushed the plunger... and to our surprise, the syringe emptied. We held our breath and searched for drops and leaks and what we found was dark brown meconium coming up the intestine, around the catheter. The nurse was ecstatic. She said, even though the meconium was coming up- instead of down into the diaper- it meant that the enzymes had finally gotten through to the top of the blockage and were beginning to do their job of breaking it down. Then I got to hold my baby and swab her mouth with colostrum. She can't eat it right now, but her mouth will absorb the important nutrients it provides and this will only help her organs function.
We were on a high! Leaving the hospital that afternoon, I was the happiest I had been since her birth. We spread the good news around to our families and everyone sent pictures of their July 4th cocktails as a cheers and an ode to Avie's successful day. That evening, we ended the night with our ritual phone call to check on our baby girl.
"Guess what, guys," said the night nurse, "there is some green waste coming into the ostomy bag. This means the intestines are starting to wake up and function, taking the waste from her tummy down through her bowels like they should."
As I ended the phone call with a hearty, "Happy 4th of July!" I heard the fireworks going off in the background.
Fireworks for our Firecracker.
Tuesday, June 16, 2015
So this is maternity leave?
It's my second day on Maternity Leave. I decided to leave work a week earlier than I originally planned and it was WORTH it! I don't know how I would have accomplished everything I need do to, if I had one less week to do it in.
So far, it hasn't been majorly relaxing but I'm trying. Yesterday I made phone calls for hours to doctor's offices, state disability (since I don't get paid maternity leave) and the vet... I folded laundry and got about half way through my thank you cards for baby showers. Today, I slept in a little and then spent an hour and a half at the vet's office. I think Tucker hates me now... but I just want him to be all caught up on shots and 100% healthy before this baby arrives.
... because I'm going to have a baby. A baby with a disease.
Last week, we got some tough news about our baby's first day of life. She is going to need to be transferred and evaluated for surgery a couple hours after she is born. This is because her latest ultrasound caught signs of a bowel rupture and leakage. I have no idea how serious this will all be until she comes out.... But they are telling me that I can't take her home right away. Even if they don't see a reason for surgery, they have to hold her for 7-10 days just to check if her systems and GI tract are working correctly. It will be even longer if surgery is needed... up to a month.
I'm trying to keep my mind off that though. I have to remind myself that stress will only make things harder on her, she feels what I feel. So I'm trying to relax and have a healthy mind. But every time I walk past that nursery, I wonder when it will actually have an occupant. While most women are sleeping and nesting on maternity leave- I'm on the phone, finding pediatricians willing to take her as a patient and switching hospitals and delivery teams last minute to ensure that I get a prepared perinatologist team, equipped to deal with high risk births and baby's in need of immediate attention.
This is my maternity leave.
It's a constant inner battle with myself. The need to relax is fighting with the realization that I have only a limited time to get ready for her arrival. I'm sure all women feel that way, but honestly, how many women have to schedule a new hospital tour just a week away from their due-date?! I also decided that we need to be sure the cat is healthy because God forbid he has some parasite that we are immune to, but she isn't! Then I have a horrible thought, If she isn't coming home right away then what's the rush? Well, dammit, I can't think about that. I have to prepare for her arrival to be like every other baby. Plus, if she is in the hospital then I will be right there with her. It's not like I will want to be home getting chores done while she lays alone in the NICU. Oh, the whirlwind!
I need to take things one day at a time, as they come. I need to be able to teach my daughter this, too. Her life is going to be one hell of a roller coaster. Want to hear something interesting? At my baby shower, guests were asked to fill out advice cards. I read them last night and oddly enough, the one right on top read, "In addition to your unconditional love- show her joy, peace, patience and pluck".
Huh. I thought I was the only person who used that word.
So far, it hasn't been majorly relaxing but I'm trying. Yesterday I made phone calls for hours to doctor's offices, state disability (since I don't get paid maternity leave) and the vet... I folded laundry and got about half way through my thank you cards for baby showers. Today, I slept in a little and then spent an hour and a half at the vet's office. I think Tucker hates me now... but I just want him to be all caught up on shots and 100% healthy before this baby arrives.
... because I'm going to have a baby. A baby with a disease.
Last week, we got some tough news about our baby's first day of life. She is going to need to be transferred and evaluated for surgery a couple hours after she is born. This is because her latest ultrasound caught signs of a bowel rupture and leakage. I have no idea how serious this will all be until she comes out.... But they are telling me that I can't take her home right away. Even if they don't see a reason for surgery, they have to hold her for 7-10 days just to check if her systems and GI tract are working correctly. It will be even longer if surgery is needed... up to a month.
I'm trying to keep my mind off that though. I have to remind myself that stress will only make things harder on her, she feels what I feel. So I'm trying to relax and have a healthy mind. But every time I walk past that nursery, I wonder when it will actually have an occupant. While most women are sleeping and nesting on maternity leave- I'm on the phone, finding pediatricians willing to take her as a patient and switching hospitals and delivery teams last minute to ensure that I get a prepared perinatologist team, equipped to deal with high risk births and baby's in need of immediate attention.
This is my maternity leave.
It's a constant inner battle with myself. The need to relax is fighting with the realization that I have only a limited time to get ready for her arrival. I'm sure all women feel that way, but honestly, how many women have to schedule a new hospital tour just a week away from their due-date?! I also decided that we need to be sure the cat is healthy because God forbid he has some parasite that we are immune to, but she isn't! Then I have a horrible thought, If she isn't coming home right away then what's the rush? Well, dammit, I can't think about that. I have to prepare for her arrival to be like every other baby. Plus, if she is in the hospital then I will be right there with her. It's not like I will want to be home getting chores done while she lays alone in the NICU. Oh, the whirlwind!
I need to take things one day at a time, as they come. I need to be able to teach my daughter this, too. Her life is going to be one hell of a roller coaster. Want to hear something interesting? At my baby shower, guests were asked to fill out advice cards. I read them last night and oddly enough, the one right on top read, "In addition to your unconditional love- show her joy, peace, patience and pluck".
Huh. I thought I was the only person who used that word.
Wednesday, May 20, 2015
Asleep all day
I am so tired.
There are only 23 work days left for me, before Igo on maternity leave and I'm counting every one. Did you catch that? I don't hate this place, but I hate this place... it's all I can do to stay focused. I feel like I'm drifting in and out of a REM sleep cycle every day.
I send an email, make a phone call and then drift... off to a place where my baby is in my arms and I'm sitting with her at home in her beautiful nursery. Then I come back to work with a snap, realizing I forgot something important. Make a phone call, do some paper work and I'm gone again.
Maybe my bosses knew this was coming and that's why they got so distant? But that can't be right because they've actually been better the last couple months. They've been keeping me busy, giving me more projects... trying to entice me to come back, I think.
Well, it's a little too late. I appreciate the effort- but it doesn't make up for the way they acted before. I'm already halfway out the door and trying not to show it. It's my daily struggle. I've stopped wearing makeup. Stopped shaving my legs... well, they are harder to reach, so I have a small excuse.
Poor Chrissy can see it in me, too. She's decided to stay here for now. But, she is taking some jobs and clients on the side. So, good for her! It just doesn't help that I'm showing her where my files are, discussing my clients and the scope of their projects so that she can take them over when I leave. Oh, it's not that I have a ton of clients... it's just the thought that in 5 weeks, I will be gone from this place and she will be 'on her own'.
Oh man, only 5 weeks. I know it will go by so fast, but I'm dying. I have ONE project right now that is supposed to be done in 2 weeks and I am so tempted to start 'phasing myself out' immediately afterwards. Maybe I could cut my last 3 weeks down to 4 days per week? Maybe, the last 2 weeks I could cut the hours down to 6 or 7 hours a day?? MAYBE, I could just say I need to be home because the exhaustion is too much and just leave a week earlier than planned!
See what I mean? Here I go, planning my exit strategy when I need to be scheduling a drywall guy for my one job. If I get this project completed on time, I should be inducted into the 'Mommy-to-be hall of fame'.
There are only 23 work days left for me, before I
I send an email, make a phone call and then drift... off to a place where my baby is in my arms and I'm sitting with her at home in her beautiful nursery. Then I come back to work with a snap, realizing I forgot something important. Make a phone call, do some paper work and I'm gone again.
Maybe my bosses knew this was coming and that's why they got so distant? But that can't be right because they've actually been better the last couple months. They've been keeping me busy, giving me more projects... trying to entice me to come back, I think.
Well, it's a little too late. I appreciate the effort- but it doesn't make up for the way they acted before. I'm already halfway out the door and trying not to show it. It's my daily struggle. I've stopped wearing makeup. Stopped shaving my legs... well, they are harder to reach, so I have a small excuse.
Poor Chrissy can see it in me, too. She's decided to stay here for now. But, she is taking some jobs and clients on the side. So, good for her! It just doesn't help that I'm showing her where my files are, discussing my clients and the scope of their projects so that she can take them over when I leave. Oh, it's not that I have a ton of clients... it's just the thought that in 5 weeks, I will be gone from this place and she will be 'on her own'.
Oh man, only 5 weeks. I know it will go by so fast, but I'm dying. I have ONE project right now that is supposed to be done in 2 weeks and I am so tempted to start 'phasing myself out' immediately afterwards. Maybe I could cut my last 3 weeks down to 4 days per week? Maybe, the last 2 weeks I could cut the hours down to 6 or 7 hours a day?? MAYBE, I could just say I need to be home because the exhaustion is too much and just leave a week earlier than planned!
See what I mean? Here I go, planning my exit strategy when I need to be scheduling a drywall guy for my one job. If I get this project completed on time, I should be inducted into the 'Mommy-to-be hall of fame'.
Friday, March 20, 2015
Ghostly
I'm invisible.
My boss has learned a new trick- looking right past me while talking to my assistant designer Chrissy, about new projects.
It's entertaining, in a way. I stare at him while he is doing it and wonder what he is thinking... does he assume I am okay with it, that I don't care, that I can't see it?? It's funny.
Chrissy hates it. And she is beginning to hate it here. I've already "lost" one assistant designer in the past month. Erin was my right arm. We told each other everything, and when I was getting the cold shoulder, so was she. It wasn't a secret that she was looking for another job. I actually told her that if I do one thing before I go on maternity leave- it will be to make sure she and Chrissy are okay. Either comfortable and happy here, or working for a better place.
Erin is working for a better place. I told her to please use me as a reference- but I never got a phone call. I knew they wouldn't need to call references, this girl is amazing. I knew it the first time I interviewed her, why wouldn't they? My boss never did though. He really never gave her any credit, or praise and it drove me nuts.
So now that I'm 'knocked up' and Erin is gone- the only person left to do any work is Chrissy. He piles the work on her daily, and yells at her almost as often. She wants out, but I think she knows how difficult that would be for the company since I'm going to be on maternity leave in a few months. She and I both know that my return is not likely... not that I've come to that conclusion definitely.
A few weeks ago, my boss and I had a heart-to-heart... if you can call it that. He had just finished a raging, fist banging rant directed towards myself and Chrissy (while Erin sat in the other room, unnoticed) when he kicked Chrissy out of the room and closed the door. He turned his chair to me and said that I should understand where he is coming from, and that he doesn't think I am coming back to work after I have my baby.
I started crying.
Not because "I had been caught" but because this conversation was taking place while the news of my baby's cystic fibrosis diagnosis was still fresh. I told him that I never intended on being a stay-at-home Mother, but that I don't know if this baby will be healthy. At the time, I didn't know what the diagnosis meant for a baby and I was clueless on what kind of care will be needed. He said he understood and that I could do whatever I needed afterwards- work from home, work part time, come back in a year...
So I thought we had an understanding. Work now, figure the rest out later. He gave me a couple new clients to work on, but then he got distant again. He hasn't made time for me in regards to these two clients. I've handed him budgets multiple times, and he tosses it in his pile of papers and says, "tomorrow". Then in the meantime he learned his new trick.... talk to Chrissy about new jobs, IN FRONT of Pluck. Then Pluck will feel like she is still involved, even though she's not.
Oh well... like I said in my last post, my priorities are completely different now. I can figure out the work thing later. I might start my own company, I might take Chrissy with me... but until then, I will just plug away at the menial tasks of the day-to-day grind that I'm 'allowed' to work on.
I think I'm okay being invisible.
My boss has learned a new trick- looking right past me while talking to my assistant designer Chrissy, about new projects.
It's entertaining, in a way. I stare at him while he is doing it and wonder what he is thinking... does he assume I am okay with it, that I don't care, that I can't see it?? It's funny.
Chrissy hates it. And she is beginning to hate it here. I've already "lost" one assistant designer in the past month. Erin was my right arm. We told each other everything, and when I was getting the cold shoulder, so was she. It wasn't a secret that she was looking for another job. I actually told her that if I do one thing before I go on maternity leave- it will be to make sure she and Chrissy are okay. Either comfortable and happy here, or working for a better place.
Erin is working for a better place. I told her to please use me as a reference- but I never got a phone call. I knew they wouldn't need to call references, this girl is amazing. I knew it the first time I interviewed her, why wouldn't they? My boss never did though. He really never gave her any credit, or praise and it drove me nuts.
So now that I'm 'knocked up' and Erin is gone- the only person left to do any work is Chrissy. He piles the work on her daily, and yells at her almost as often. She wants out, but I think she knows how difficult that would be for the company since I'm going to be on maternity leave in a few months. She and I both know that my return is not likely... not that I've come to that conclusion definitely.
A few weeks ago, my boss and I had a heart-to-heart... if you can call it that. He had just finished a raging, fist banging rant directed towards myself and Chrissy (while Erin sat in the other room, unnoticed) when he kicked Chrissy out of the room and closed the door. He turned his chair to me and said that I should understand where he is coming from, and that he doesn't think I am coming back to work after I have my baby.
I started crying.
Not because "I had been caught" but because this conversation was taking place while the news of my baby's cystic fibrosis diagnosis was still fresh. I told him that I never intended on being a stay-at-home Mother, but that I don't know if this baby will be healthy. At the time, I didn't know what the diagnosis meant for a baby and I was clueless on what kind of care will be needed. He said he understood and that I could do whatever I needed afterwards- work from home, work part time, come back in a year...
So I thought we had an understanding. Work now, figure the rest out later. He gave me a couple new clients to work on, but then he got distant again. He hasn't made time for me in regards to these two clients. I've handed him budgets multiple times, and he tosses it in his pile of papers and says, "tomorrow". Then in the meantime he learned his new trick.... talk to Chrissy about new jobs, IN FRONT of Pluck. Then Pluck will feel like she is still involved, even though she's not.
Oh well... like I said in my last post, my priorities are completely different now. I can figure out the work thing later. I might start my own company, I might take Chrissy with me... but until then, I will just plug away at the menial tasks of the day-to-day grind that I'm 'allowed' to work on.
I think I'm okay being invisible.
Monday, February 9, 2015
Defy the Odds
It's funny... just when you think you know where you stand in life, God gives your world a little shake and you lose your footing.
My last post was about work concerns. Since posting, I had come to the conclusion that I would fight this out for the last few months of pregnancy and then decide later what I was going to do for work. I would have the time off with the baby to look into starting my own company, but I could come back to work part-time if needed.
It's not a complete plan, but it was simple enough. Life and my near future was pretty much figured out.
Until, all of a sudden, it wasn't.
3 days ago, my husband and I got confirmation that our little, 5 month, baby-to-be has Cystic Fibrosis. We have no history of it in the family, but it showed up on my standard maternal screening. If that wasn't stressful enough- we found Mike had the same mutation as I.
Any person has a 1 in 25 chance of carrying a CF mutation. The odds for a couple to both have this mutation is 1 in 625. Since we both were carriers, our baby had a 1 in 4 chance of having CF, 3 in 4 that it would not. The odds were in our favor, but we hit the jackpot.
I'm not even sure if I know how to finish this post.
It's obviously a huge game changer. I don't know what this will mean for our daily lives, much less how it will affect my career aspirations. But it's funny- my career aspirations don't even matter anymore.
My last post was about work concerns. Since posting, I had come to the conclusion that I would fight this out for the last few months of pregnancy and then decide later what I was going to do for work. I would have the time off with the baby to look into starting my own company, but I could come back to work part-time if needed.
It's not a complete plan, but it was simple enough. Life and my near future was pretty much figured out.
Until, all of a sudden, it wasn't.
3 days ago, my husband and I got confirmation that our little, 5 month, baby-to-be has Cystic Fibrosis. We have no history of it in the family, but it showed up on my standard maternal screening. If that wasn't stressful enough- we found Mike had the same mutation as I.
Any person has a 1 in 25 chance of carrying a CF mutation. The odds for a couple to both have this mutation is 1 in 625. Since we both were carriers, our baby had a 1 in 4 chance of having CF, 3 in 4 that it would not. The odds were in our favor, but we hit the jackpot.
I'm not even sure if I know how to finish this post.
It's obviously a huge game changer. I don't know what this will mean for our daily lives, much less how it will affect my career aspirations. But it's funny- my career aspirations don't even matter anymore.
Monday, January 19, 2015
Bold Moves, Baby Moves
It's 2015. My oldest brother says that this is the year of "bold moves".... so, this should be interesting then.
I've been at my current place of employment for 3 years now. I have about 14 remodel projects under my belt, 3 assistant designers and I still reside in my very own office.
My husband and I have been joyfully married for one year and 3 months.
I am now 17 weeks pregnant.
It's crazy to think that this 'once lost girl' will soon be a 'have it all together mommy'.... or will she?
Let's rewind a few months: I got pregnant very easily. I guess I'm blessed that way. But the thing I didn't think about was how this would affect my job. I simply didn't think that it would. Women get pregnant all the time, they have babies, they work and live and have more babies.
And then I was nauseous. All. The. Time. It was a hard secret to keep for those first fragile 12 weeks, but when it came time to spill the beans, I suddenly got really nervous. I don't know what came over me, and when I spoke those two words; "I'm pregnant", to my bosses, I realized what it was.
They weren't happy for me.
I can still see their faces when they heard the news and I wonder what mine looked like. They had the look of parents being told that their daughter is marrying a horrible boyfriend, mixed with an underlying acknowledgement that they are SUPPOSED to be happy for me. Terrified smiles. Stunned, frozen, silent.
I must have looked like a girl just crowned prom queen, only to get a bucket of pig's blood dumped on my head.
Then, as if that wasn't bad enough, my projects started to get taken away from me. It was slow and sneaky, and if I hadn't been occupied by the baby news, I would have actually seen it coming. Now, I'm sitting at work, writing this post because I don't have anything better to do. On top of being bored... I'm actually ignored. And totally avoided. It's like I have some disease that nobody wants to catch.
In hindsight, I guess I should have known that this would happen. Seriously, I can now say that I've seen a look of annoyance on their faces when I've left at 5:00 (and not 5:30 or 6:00). I remember now the tone that I thought was 'joking' about not wanting to work on a Saturday, was actually a warning: if you don't continue to go above and beyond, we will kick you out.
It's just strange to me. I have loved this place for years. I love my work, my responsibilities, my co-workers and I love my bosses. But, how do we come back from this? I haven't done anything productive at work in over a month. OVER A MONTH! There hasn't been a real conversation between myself and one of the bosses since before Christmas. How do you you see a person every day and never speak to them?
So, here I am again. A crossroads of life decisions... and this one's a doozy. Baby Pluck is due July 1st. I have just under 6 months before I'm a mommy. 6 months to either change things around here at work, or make the decision to leave.
If I leave, will I start my own company or join forces with another firm?
I've been at my current place of employment for 3 years now. I have about 14 remodel projects under my belt, 3 assistant designers and I still reside in my very own office.
My husband and I have been joyfully married for one year and 3 months.
I am now 17 weeks pregnant.
It's crazy to think that this 'once lost girl' will soon be a 'have it all together mommy'.... or will she?
Let's rewind a few months: I got pregnant very easily. I guess I'm blessed that way. But the thing I didn't think about was how this would affect my job. I simply didn't think that it would. Women get pregnant all the time, they have babies, they work and live and have more babies.
And then I was nauseous. All. The. Time. It was a hard secret to keep for those first fragile 12 weeks, but when it came time to spill the beans, I suddenly got really nervous. I don't know what came over me, and when I spoke those two words; "I'm pregnant", to my bosses, I realized what it was.
They weren't happy for me.
I can still see their faces when they heard the news and I wonder what mine looked like. They had the look of parents being told that their daughter is marrying a horrible boyfriend, mixed with an underlying acknowledgement that they are SUPPOSED to be happy for me. Terrified smiles. Stunned, frozen, silent.
I must have looked like a girl just crowned prom queen, only to get a bucket of pig's blood dumped on my head.
Then, as if that wasn't bad enough, my projects started to get taken away from me. It was slow and sneaky, and if I hadn't been occupied by the baby news, I would have actually seen it coming. Now, I'm sitting at work, writing this post because I don't have anything better to do. On top of being bored... I'm actually ignored. And totally avoided. It's like I have some disease that nobody wants to catch.
In hindsight, I guess I should have known that this would happen. Seriously, I can now say that I've seen a look of annoyance on their faces when I've left at 5:00 (and not 5:30 or 6:00). I remember now the tone that I thought was 'joking' about not wanting to work on a Saturday, was actually a warning: if you don't continue to go above and beyond, we will kick you out.
It's just strange to me. I have loved this place for years. I love my work, my responsibilities, my co-workers and I love my bosses. But, how do we come back from this? I haven't done anything productive at work in over a month. OVER A MONTH! There hasn't been a real conversation between myself and one of the bosses since before Christmas. How do you you see a person every day and never speak to them?
So, here I am again. A crossroads of life decisions... and this one's a doozy. Baby Pluck is due July 1st. I have just under 6 months before I'm a mommy. 6 months to either change things around here at work, or make the decision to leave.
If I leave, will I start my own company or join forces with another firm?
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