No Restrictions.
She has been nippling her entire 10mL on her own so they have taken off her restriction. So starting today she can take as much milk as she wants. If she is too tired they are still giving her occasional feedings through her nasal tube. When they help her out, they are increasing each feeding by 1mL. She is on a 3 hour schedule 3,6,9,12 around the clock. She was pretty sleepy today and only took 5 or 6 on her own at her feedings, but they topped her off through the tube and she was up to 13mL at her 6pm feeding and tolerating it well.
Feedings Update.
They have bumped her up to 10mL of breast milk every three hours! She is nippling 5 or 6 on her own each time...unless she gets a crummy nurse. Most of the nurses are great, but some are lazy and take advantage of the fact that she has a feeding tube and don't take the time to give her a chance to try eating on her own. I always get frustrated when they do that. Anyway, she is doing really great and we are so happy that she is tolerating the feedings well. She is still only at about a twelfth of what a well baby eats, but she is getting there.
One Step Closer.
The doctors decided to start her on breast milk today. She gets 5mL every 4 hours. She nipples what she can from breast or bottle, then they give her the rest down a nasal feeding tube if she can't finish it. So far she is tolerating it okay, only spitting up small amounts occasionally. Once she is getting enough, they can start weening and eventually take out the IV's she has for nutrients- which is one more machine we want to see gone. One step closer to coming home.
The Next Big Hurdle.
It is looking like Allison's next big hurdle will be figuring out how to suck and swallow while doing her rapid breathing. Imagine trying to drink a glass of milk after you just sprinted a mile. She is now two weeks old so missed out on those initial days, plus had tubes down her throat which may have caused her to develop a slight aversion to things in her mouth. We really take knowing how to eat for granted.
The goal the doctors have set for her is to drink and keep down 5mL of Pedia Lite (inhanced water for babies, sort of like Gatorade for us) two times in a day before they give her breast milk. So far she has drank the whole amount once but threw it back up, and half the amount three times and kept that down twice - so she is trying. The worry is that if she can't keep things down she will need another surgery to repair the muscle at the top of the stomach that keeps the food from coming back up. Also, if she can't get the feeding down, she will have to have a surgery to put in a G-tube for feeding. So, we really want to see her meet her feeding goals. The nurses have told me that they will give her lots of time and chances to try feeding before those decisions are made which is good, but knowing there is a chance that more surgery is needed is scary.
Besides the feeding hurdle that Alli girl is being faced with, she is doing really well. All of her vitals look good, and she is still on the IV that gives her the nutrients she needs directly into her blood until they figure out if her tummy is working. The cultures they took to check for infection have not shown any growth so that is good. They will make a decision today about the antibiotics she is on. They may finish them out just in case. She is going over 12 hours a day without pain medications which is great! They have been trying to get her weened off all of that. And she is as cute as can be :) It is has been really nice to be able to hold her all the time now and she continues to look better and better everyday.
I will continue to update with the progress she makes or if any big changes take place. Please continue to keep her in your thoughts as she continues her recovery.
The goal the doctors have set for her is to drink and keep down 5mL of Pedia Lite (inhanced water for babies, sort of like Gatorade for us) two times in a day before they give her breast milk. So far she has drank the whole amount once but threw it back up, and half the amount three times and kept that down twice - so she is trying. The worry is that if she can't keep things down she will need another surgery to repair the muscle at the top of the stomach that keeps the food from coming back up. Also, if she can't get the feeding down, she will have to have a surgery to put in a G-tube for feeding. So, we really want to see her meet her feeding goals. The nurses have told me that they will give her lots of time and chances to try feeding before those decisions are made which is good, but knowing there is a chance that more surgery is needed is scary.
Besides the feeding hurdle that Alli girl is being faced with, she is doing really well. All of her vitals look good, and she is still on the IV that gives her the nutrients she needs directly into her blood until they figure out if her tummy is working. The cultures they took to check for infection have not shown any growth so that is good. They will make a decision today about the antibiotics she is on. They may finish them out just in case. She is going over 12 hours a day without pain medications which is great! They have been trying to get her weened off all of that. And she is as cute as can be :) It is has been really nice to be able to hold her all the time now and she continues to look better and better everyday.
I will continue to update with the progress she makes or if any big changes take place. Please continue to keep her in your thoughts as she continues her recovery.
Making Progress 4/19/2011
Today was a big day for Allison. She finally got her first sponge bath and was moved from her raised, heated bed for critical babies into an open crib. She had the suction tube removed from her stomach and has been given the go ahead to start small feedings of PediaLite. If the feedings go well they will start her on breast milk. Because her breathing is so rapid with her one little lung, they are uncertain if she will be able to suck and swallow and believe it is likely she will be put on a feeding tube, but they are trying bottle first. Dr. Georgeson (her surgeon) said that babies with defects as severe as hers usually go home on a feeding tube and oxygen. What she needs now is to grow, so struggling to eat and breathe is not something she can afford to do. She uses a lot of energy breathing so getting enough calories is very important. Eventually she will grow out of needing the extra help.
I got to hold her today. Twice! And when Steve came from work he was able to hold her for the first time too. She also went most of the day without any pain medications. What a strong girl! Dad picked out a cute new cap for her to wear with butterflies. I think she likes it very much :) We were told she may be showing signs of possible infection so they started her on some antibiotics and took a blood and urine culture to be on the safe side. Hopefully it is nothing. All in all it was a really great day and a lot of progress was made.
I got to hold her today. Twice! And when Steve came from work he was able to hold her for the first time too. She also went most of the day without any pain medications. What a strong girl! Dad picked out a cute new cap for her to wear with butterflies. I think she likes it very much :) We were told she may be showing signs of possible infection so they started her on some antibiotics and took a blood and urine culture to be on the safe side. Hopefully it is nothing. All in all it was a really great day and a lot of progress was made.
Off Ventilation 4/17/2011
Allison is breathing all on her own now. She is such a strong girl to do all that work with just one lung! It is so nice to see the machines that surround her slowly dwindling in numbers. First they took away the Nitric Oxide machine which was dilating the blood vessels in her lungs for her. Next to go was a machine that gave her a drug called Dopamine that kept her blood pressure high enough. As her vitals stayed perfect through these changes, they began lowering the amount of help the ventilator gave her. Next to go was the photo therapy light she had for jaundice and a machine that administered a drug for pain called Fentanyl. And today they took her off the ventilator. What she is still hooked up to are a nasal cannula for oxygen, a suction tube for stomach secretions, and an IV of fluids, sugars, and fats for nutrition. She also receives small doses of Morphine for pain as needed.
Everyday getting to go in and see that one more thing has left her bedside and see how much better she looks is so encouraging. Each day she opens her eyes more and looks better in color than the day before. We can actually hear her little cry now too. The ventilator went down through her windpipe so she couldn't make any sound before. Who knew it could ever be exciting to hear your baby cry?! We are still waiting to be able to hold her, but it is looking like that day will be here soon. I figure it will only be that much more special since we had to wait.
Hoping we will have more exciting news soon. Until then continue to keep her in your thoughts as she heals.
Everyday getting to go in and see that one more thing has left her bedside and see how much better she looks is so encouraging. Each day she opens her eyes more and looks better in color than the day before. We can actually hear her little cry now too. The ventilator went down through her windpipe so she couldn't make any sound before. Who knew it could ever be exciting to hear your baby cry?! We are still waiting to be able to hold her, but it is looking like that day will be here soon. I figure it will only be that much more special since we had to wait.
Hoping we will have more exciting news soon. Until then continue to keep her in your thoughts as she heals.
Surgery 04/12/11
Allison received her repair surgery today. She did very well. The doctors say the next three days are critical in her recovery, but it should be uphill from there. Unfortunately she did have to receive the invasive form of the surgery, so recovery time will be a bit longer and she will have a scar across her lower left chest. But no big deal - she can finally work on getting better now!
The hole in her diaphragm turned out to be much larger than they expected, so they had to use a gore-tex patch to do the repair. They also said her esophagus muscle looks very thin, so there is a chance she will need reflux repair in the future. Also, 30% of CDH repairs develop re-herniation and a second repair is required. So basically, there are no guarantees for us... as usual, but she is definitely on track now.
Her vitals stayed perfect through surgery and the hours following. Now we are just waiting and hoping that stays the same for the next few days. After that, it is all up to her. They want to see her lungs start functioning without the ventilator and they want to see her able to eat on her own before she comes home. They are unable to give us a time frame because every baby is different. They also told us that it is likely she will come home on a nasal cannula for oxygen for sometime, but eventually she should be able to live a perfectly normal life without any kind of support.
Please continue to keep her in your thoughts and prayers these next few days. I will update again if we receive any new news or big changes take place.
The hole in her diaphragm turned out to be much larger than they expected, so they had to use a gore-tex patch to do the repair. They also said her esophagus muscle looks very thin, so there is a chance she will need reflux repair in the future. Also, 30% of CDH repairs develop re-herniation and a second repair is required. So basically, there are no guarantees for us... as usual, but she is definitely on track now.
Her vitals stayed perfect through surgery and the hours following. Now we are just waiting and hoping that stays the same for the next few days. After that, it is all up to her. They want to see her lungs start functioning without the ventilator and they want to see her able to eat on her own before she comes home. They are unable to give us a time frame because every baby is different. They also told us that it is likely she will come home on a nasal cannula for oxygen for sometime, but eventually she should be able to live a perfectly normal life without any kind of support.
Please continue to keep her in your thoughts and prayers these next few days. I will update again if we receive any new news or big changes take place.
Doctor's Update 04/10/11
This morning we received a phone call from Dr. Gretebeck (Allison's NICU doctor) with an update on baby Alli's condition. She says that she is "tickled" with how well Allison is doing considering her condition. She has been colaborating daily with Dr. Georgeson (Allison's Surgeon) and they are planning on having her surgery Tuesday if things continue on this positive path. Tomorrow they are going to try switching her from her high frequency ventilator to a standard ventilator. The standard ventilation is required for the surgery to be preformed, so hopefully she does well with the switch. It was so exciting to hear that they are planning on surgery so soon since just a day or two ago it looked like surgery could be at least another week out. The CDH repair is the next big step to Allison's recovery, so we are glad to hear they believe she is ready.
Allison's Arrival 04/07/2011
After a long day of teaching, my water broke right when I got home around 4pm Wednesday. My mom rushed over from working on the store - luckily only a few blocks from the house - to get me to Sacred Heart ASAP. I called Steve (who was at work and without a car because I was suppose to pick him up when he got off at 5) to let him know what was going on. Fortunately, his dad was available to pick him up and get him rushed over to the hospital as well.
They got me all checked in and determined that Allison was definitely on her way. Steve and his parents showed up not long after they got me into the room. They had the family wait in the waiting area for a time while they finished up admissions with Steve and I. When they were able to come back in, we all played the waiting game as I did my best to breathe through contractions. My sister-in-law, Jauharallah, was able to come and join the action after she finished up her nursing shift. It is so nice that we have a Sacred Heart staff member in the family. Steve's parents stayed as long as they could before they had to head home.
After several hours I did decide to receive pain management. The doctor came in and placed the epidural - that was a struggle but ended up being worth the relief. After they placed it they also decided to check my cervix. I was up to a 6 - more than half way there! We had a little scare with a blood pressure drop but they gave me a quick shot and placed me on some oxygen and it came right back up.
After I was fully dilated we started in with some mild pushing. At this point my team was Jauharallah, Steve, my mom, and our amazing delivery nurse Tom. We tried several different positions of pushing to get things going. Once baby's head was mostly visible, they called in the team of doctors - an OB to play catch, and several Intensive Infant Care doctors to get Allison set up on her machines first thing.
Steve held one leg, my mom held one leg, and Jauharallah helped with my back. After several good pushes, out she came at 2:57am. She gave us two little cries before they started in with the machines. Steve cut the cord and they whisked her over to a little station they had set up with all of her equipment. Steve and Jauharallah went over to watch as they were getting her all set up. My mom stayed by my side as the doctor finished up with my delivery. They wheeled Allison's station to my bedside for a short moment so that I could take a look at her before they took her up to the Intensive Care Unit. I may be bias, but she is the cutest baby in the world! She was making the sweetest little pouty face as they wheeled her away.
After they got me all stitched up, it was time to move rooms. Out of labor and delivery and into mother-baby recovery. Unfortunately in this case it is only mother recovery. After they got me settled into my new room, Jauharallah and my mom headed home to get some rest after a long night. The NICU (neonatal intensive care unit) doctor came to give us an update on Alli's condition. They were able to get her on the right combination of drugs and oxygen to get her stabilized and we could now go and visit her.
Steve headed up right away while I waited on the nurses approval. When Steve got back he headed straight for the couch and fell asleep. Once the nurse checked all my vitals, she wheeled me up to have a visit with Allison. Her stats were great and she was nice and sedated. It was fun to talk to her and watch her wiggle her sweet little toes, but it was really hard to see that she needed so many tubes, wires, and machines to keep her going.
After my visit I came back to the room to try for some rest. I slept almost two hours when the nurses came in to have me eat some breakfast and again check on my vitals. Steve and I were now awake for the rest of the day. We had several visits from friends and family and paid Allison many visits as well. We finally got some on and off sleep through Thursday night.
Today is now Friday, and Allison's stability (blood oxygen levels, blood pressure, heart rate, etc.) has had its ups and downs but she is still just sleeping away. The surgeons will make some decisions about her surgery after she has a few days of good stability. I will update with any big news we receive.
They got me all checked in and determined that Allison was definitely on her way. Steve and his parents showed up not long after they got me into the room. They had the family wait in the waiting area for a time while they finished up admissions with Steve and I. When they were able to come back in, we all played the waiting game as I did my best to breathe through contractions. My sister-in-law, Jauharallah, was able to come and join the action after she finished up her nursing shift. It is so nice that we have a Sacred Heart staff member in the family. Steve's parents stayed as long as they could before they had to head home.
After several hours I did decide to receive pain management. The doctor came in and placed the epidural - that was a struggle but ended up being worth the relief. After they placed it they also decided to check my cervix. I was up to a 6 - more than half way there! We had a little scare with a blood pressure drop but they gave me a quick shot and placed me on some oxygen and it came right back up.
After I was fully dilated we started in with some mild pushing. At this point my team was Jauharallah, Steve, my mom, and our amazing delivery nurse Tom. We tried several different positions of pushing to get things going. Once baby's head was mostly visible, they called in the team of doctors - an OB to play catch, and several Intensive Infant Care doctors to get Allison set up on her machines first thing.
Steve held one leg, my mom held one leg, and Jauharallah helped with my back. After several good pushes, out she came at 2:57am. She gave us two little cries before they started in with the machines. Steve cut the cord and they whisked her over to a little station they had set up with all of her equipment. Steve and Jauharallah went over to watch as they were getting her all set up. My mom stayed by my side as the doctor finished up with my delivery. They wheeled Allison's station to my bedside for a short moment so that I could take a look at her before they took her up to the Intensive Care Unit. I may be bias, but she is the cutest baby in the world! She was making the sweetest little pouty face as they wheeled her away.
After they got me all stitched up, it was time to move rooms. Out of labor and delivery and into mother-baby recovery. Unfortunately in this case it is only mother recovery. After they got me settled into my new room, Jauharallah and my mom headed home to get some rest after a long night. The NICU (neonatal intensive care unit) doctor came to give us an update on Alli's condition. They were able to get her on the right combination of drugs and oxygen to get her stabilized and we could now go and visit her.
Steve headed up right away while I waited on the nurses approval. When Steve got back he headed straight for the couch and fell asleep. Once the nurse checked all my vitals, she wheeled me up to have a visit with Allison. Her stats were great and she was nice and sedated. It was fun to talk to her and watch her wiggle her sweet little toes, but it was really hard to see that she needed so many tubes, wires, and machines to keep her going.
After my visit I came back to the room to try for some rest. I slept almost two hours when the nurses came in to have me eat some breakfast and again check on my vitals. Steve and I were now awake for the rest of the day. We had several visits from friends and family and paid Allison many visits as well. We finally got some on and off sleep through Thursday night.
Today is now Friday, and Allison's stability (blood oxygen levels, blood pressure, heart rate, etc.) has had its ups and downs but she is still just sleeping away. The surgeons will make some decisions about her surgery after she has a few days of good stability. I will update with any big news we receive.
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