Monday: Madelynn is seven weeks old today. (Gestationally she is 33 weeks 3 days.)
*Today has brought more apnea spells. She had five during the night and three more
today. They are looking more seriously at putting an oxygen tube in again. For now she remains on the CPAP. There is a bright side: Her lungs are slowly starting to improve. They have her on a seven-day course of antibiotics coupled with the 30-day treatment of nitriceoxide. The main thing to remember about her breathing problems is her neurological immaturity. This problem should go away the older she gets.
*She is up to 2 pounds 6 ounces (1090 grams) and is still the same length.
*They are putting a PIC line in again to help administer her medications.
* When we were visiting Maddie when she stopped breathing. Her heart rate dropped as well. It was the most helpless feeling in the world to watch your baby get bagged and not be able to do anything. She did recover after about 90 seconds.
Lately everything seems like it's going down hill, but that means it's only up hill from here. She will improve, and get better.
Tuesday: Maddie's last apnea spell was at 5 AM this morning. She has been improving slowly, but surely. She is back on her caffeine alternative stimulant. They took her off for two courses because it raised her heart rate so much, but it seemed to cause the apnea. They felt the high heart rate was the lesser of the two evils.
*She has some bleeding in her stomach from all the suction, but they aren't too worried about it.
* She has three more days of antibiotics.
*She is still getting her nutrients through an IV in her hand. She probably won't start getting feedings for another couple of days.
*She is done 40 grams to 1050, but her nurse, Amy (who we love!), said they changed her isolette, and not to worry about it too much.
Wednesday: Our little potato bug is doing so much better. She is staying around 35% oxygen. She has not had any apnea spells, and her stomach looks a ton better. *Madelynn's eye exam went well. No changes from the last exam. The optomistrist from Primary's will be back in two weeks.
Thursday: Maddie is doing better. She is down on her rate with the oxygen. They are lowering her nitricoxide levels. Every five days they move her intake down by five. She had a couple of spells for Amy last night, and for Whitney this afternoon, but nothing too serious.
*We found out today she has some small decay spots on her brain. We were told to hope for the best, but be realistic. These spots may lead to some level of mental retardation, but it is something we won't know until she is much older.
*Maddie weighs in at 1080 grams tonight.
Friday: The reason the NICU is such a roller coaster is because the members of the team don't seem to communticate with each other and like to tell parents things that aren't particularly true. The neuorolist isn't convinced the small areas seen on Maddie's head are decay spots. He is not really worried about it. They will do an MRI in six weeks when Maddie is term to determine what it is they could be seeing.
*Madelynn is 34 weeks gestationally today.
*Maddie is up to 2 pounds 10 ounces. She is six ounces from 3 pounds!
*She is getting formula again. They started her out on 3 mL, but if she handles it well they will not go as slow as they did when she was first getting milk. A full feeding is 17 mL.
*She is done with her antibotic round.
*She had another blood transfusion because her hermaticrit level was low.
*They are weening her off of the ventilator. They are doing this slowly this time as opposed to before when they took her off of it all at once.
*She is recovering well from her infections and other issues.
Saturday: She was taken off of her rate, and is handling everything well.
Sunday: We got to hold Maddie after two weeks of her being sick.
*She gained a few grams, but not enough to get her to the next ounce.
*She is still doing well on her breathing (knock on wood).
November 9, 2009
November 8, 2009
Favorite Pictures
We post photos of Maddie on the weekly slide for nearly everyday, but once in a while, as in this case, a photo just melts our hearts and needs it's own post.
I put this one up because she has nothing on her face for a brief moment.
I put this one up because she has nothing on her face for a brief moment.
Landon Scott
Meet our little nephew Landon! He is the first child for Jeremy's brother Gerald, and sister-in-law Lisa, who have graciously allowed me to post photos of him. He was born August 18th. It was love at first sight with this little nugget, and how could it not be? Just look at him.
Landon having fun with Uncle Jeremy. I apologize for the video quality.
Landon with his Daddy Gerald...probably should have moved the bottle out of the photo. I need photo shop. :o)
Landon having fun with Uncle Jeremy. I apologize for the video quality.
Meeting the Paternal Aunts and Uncles
We got a wonderful surprise this week. Jeremy's brother and his family came down to Utah for a week. The whole Hurst clan, minus Amanda and Brett (whom we missed!), got to meet Madelynn.
Aunt Lisa
Aunt Ricky
Uncle Gerald (Who says Maddie already has him wrapped around her finger.)
Uncle Preston
Aunt Lisa
Aunt Ricky
Uncle Gerald (Who says Maddie already has him wrapped around her finger.)
Uncle Preston
November 4, 2009
Maddie's Little Squeaks
Maddie is so tiny she doesn't quite coo yet. Instead she squeaks. You can hear some of the noises she makes in the video below.
November 3, 2009
November 2, 2009
Week Seven November 2 - 8
Monday: Madelynn is six weeks old! I had the opportunity to hold her for more than an hour today. Her cooing sounds more liking squeaking. She was pretty content, but then her little body had enough of being outside the isolette, and she had to go back in. She is the same weight. She is completely on formula now. They add 27 calories per feeding to help her gain weight. She is receiving 17 cc every three hours.
Tuesday: Madelynn's oxygen machine has had the rate turned off. This means the CPAP is letting her do all the breath, and just supplying her with the oxygen. Her weight stayed the same. She is having some acid reflux. They have slowed her feedings to 17 cc over 90 minutes instead of 60.
Wednesday: The nurse practitioner re-wrote Maddie's orders to allow us to hold her everyday as long as she can tolerate the frequency. They put her machine back on a rate. She doesn't quiet know how to breath on her own. She has gained 40 more grams. She is up to 990. This puts her between 2 pounds 2 ounces and 2 pounds 3 ounces. Jeremy got to hold Maddie today. She lasted about a half hour before stats started to drop. She is up to 18 cc of formula.
Thursday: Maddie was taken off of her caffeine and given an alternative medicine to help reduce the reflux she has been having.
Friday: Madelynn's Chronic Lung Disease has gotten worse. They took an X-Ray last night and it showed damage to her lungs. They have started her on a 30-day treatment of nitriceoxide. They hope this will repair the damage. Because of the disease Maddie is more prone to getting respiratory infections when she comes home. We have been advised not to have visitors over at our home until she is stronger.
Saturday: Madelynn is struggling. We are concerned, but cautiously optimistic that she will continue to fight her set backs.
*Maddie has a dilated intestine. It may be NEC, it may not. They will run tests to see if there are signs of infection throughout the day. The positive thing they are seeing is her immature white blood count is not increasing.
*I spoke incorrectly yesterday about what the nitriceoxide does. It does not repair the lungs, but remodels them, if you will. Meaning it creates more veins to get oxygen through.
*They have taken her off of the formula and have returned her to an IV. The nutrients are going through an IV in her head, and the blood transfusion is going through an IV in her foot
*She weights 1030 grams. In between 2 pounds 4 ounces and 2 pounds 5 ounces.
I know it seems like a few steps back after all the improvements Madelynn has been making. It is just a reminder of the roller coaster the staff warned us about. One can never get to complacent with the NICU baby. She definitely keeps us on our toes. All that being said we don't for a second forget how truly blessed we are to have Madelynn. When all the odds were against her she fought against them. She has never had a brain bleed. Her eyes are developing properly. She sailed through her heart surgery. We believe she can hear. And first and foremost she is a fighter. Whether there is more at work than just medical medicine or not; she has changed our outlook on life, hope, love, and faith.
Sunday: Maddie's heart rate was elevated tonight. So they are letting her rest before they do any weighing. They didn't have a lot of changed information for us.
Tuesday: Madelynn's oxygen machine has had the rate turned off. This means the CPAP is letting her do all the breath, and just supplying her with the oxygen. Her weight stayed the same. She is having some acid reflux. They have slowed her feedings to 17 cc over 90 minutes instead of 60.
Wednesday: The nurse practitioner re-wrote Maddie's orders to allow us to hold her everyday as long as she can tolerate the frequency. They put her machine back on a rate. She doesn't quiet know how to breath on her own. She has gained 40 more grams. She is up to 990. This puts her between 2 pounds 2 ounces and 2 pounds 3 ounces. Jeremy got to hold Maddie today. She lasted about a half hour before stats started to drop. She is up to 18 cc of formula.
Thursday: Maddie was taken off of her caffeine and given an alternative medicine to help reduce the reflux she has been having.
Friday: Madelynn's Chronic Lung Disease has gotten worse. They took an X-Ray last night and it showed damage to her lungs. They have started her on a 30-day treatment of nitriceoxide. They hope this will repair the damage. Because of the disease Maddie is more prone to getting respiratory infections when she comes home. We have been advised not to have visitors over at our home until she is stronger.
Saturday: Madelynn is struggling. We are concerned, but cautiously optimistic that she will continue to fight her set backs.
*Maddie has a dilated intestine. It may be NEC, it may not. They will run tests to see if there are signs of infection throughout the day. The positive thing they are seeing is her immature white blood count is not increasing.
*I spoke incorrectly yesterday about what the nitriceoxide does. It does not repair the lungs, but remodels them, if you will. Meaning it creates more veins to get oxygen through.
*They have taken her off of the formula and have returned her to an IV. The nutrients are going through an IV in her head, and the blood transfusion is going through an IV in her foot
*She weights 1030 grams. In between 2 pounds 4 ounces and 2 pounds 5 ounces.
I know it seems like a few steps back after all the improvements Madelynn has been making. It is just a reminder of the roller coaster the staff warned us about. One can never get to complacent with the NICU baby. She definitely keeps us on our toes. All that being said we don't for a second forget how truly blessed we are to have Madelynn. When all the odds were against her she fought against them. She has never had a brain bleed. Her eyes are developing properly. She sailed through her heart surgery. We believe she can hear. And first and foremost she is a fighter. Whether there is more at work than just medical medicine or not; she has changed our outlook on life, hope, love, and faith.
Sunday: Maddie's heart rate was elevated tonight. So they are letting her rest before they do any weighing. They didn't have a lot of changed information for us.
October 26, 2009
Week Six October 26 - November 1
Monday: Maddie is five weeks old today (36 days old). She has her first diaper rash. Poor girl. She is down on how many breaths per minute she is getting from the machine. She is at 20, and at midnight they will lower her to 18. The nurses can see her spontaneous breathing. She is getting stronger! They are increasing the calories in her milk. She is now getting 27 additional calories a meal in the hopes she will gain more weight. She is still sitting at 1 pound 13 ounces, and 13 1/2 inches.
Tuesday: They have put her oxygen to 16. Tomorrow they hope to take out the oxygen tube and put her on a CPAP. She gained 70 grams. She is up to 1 pound 15 ounces. So close to the 2 pound mark!
Wednesday: Maddie is now off her ventilator. (Check out the pictures!) She is on a CPAP. Once they are able to ween her off of the CPAP, the nurses will introduce her to the bottle for feedings. Primary's eye specialist came down to check to make sure her eyes are developing normally. She got a clean bill of eye health! They will be back in two weeks to make sure all is still well. (Had the eye examn not gone well they would perform laser surgery to try and prevent blindness.) She is doing so amazing. We are fortunate. No matter how this whole situation turns out we know how lucky we are.
Thursday: Maddie is doing well on her CPAP. She does need the occasional asthma medication because of her Chronic Lung Disease. Her biggest piece of news today is that she now weighs two pounds!
Friday: Madelynn is gestationally 32 weeks. To celebrate Maddie reached 2 pounds 2 ounces. She has gained one pound since her birthday! Her Chronic Lung Disease has caused her to wheezing to increase. They thought at first it may have been an infection. The viral panel came back negative. She is receiving abutirol to help with her breathing.
Saturday: She didn't gain anything, but she didn't lose anything. Her breathing is getting better.
Sunday: Madelynn has reached fourteen inches in length! Other than that we are sitting at status quo. It's not a bad thing!
Tuesday: They have put her oxygen to 16. Tomorrow they hope to take out the oxygen tube and put her on a CPAP. She gained 70 grams. She is up to 1 pound 15 ounces. So close to the 2 pound mark!
Wednesday: Maddie is now off her ventilator. (Check out the pictures!) She is on a CPAP. Once they are able to ween her off of the CPAP, the nurses will introduce her to the bottle for feedings. Primary's eye specialist came down to check to make sure her eyes are developing normally. She got a clean bill of eye health! They will be back in two weeks to make sure all is still well. (Had the eye examn not gone well they would perform laser surgery to try and prevent blindness.) She is doing so amazing. We are fortunate. No matter how this whole situation turns out we know how lucky we are.
Thursday: Maddie is doing well on her CPAP. She does need the occasional asthma medication because of her Chronic Lung Disease. Her biggest piece of news today is that she now weighs two pounds!
Friday: Madelynn is gestationally 32 weeks. To celebrate Maddie reached 2 pounds 2 ounces. She has gained one pound since her birthday! Her Chronic Lung Disease has caused her to wheezing to increase. They thought at first it may have been an infection. The viral panel came back negative. She is receiving abutirol to help with her breathing.
Saturday: She didn't gain anything, but she didn't lose anything. Her breathing is getting better.
Sunday: Madelynn has reached fourteen inches in length! Other than that we are sitting at status quo. It's not a bad thing!
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