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'.
Friday, July 31, 2015
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.
Subscribe to:
Comments (Atom)