Tuesday: The medical staff wants us to spend the night on Friday, and take her home on Saturday. We are really excited. Thankfully the only thing we have to do is clean the carpets. Everything else is ready for her arrival.
She is 7 1/2 pounds. Her hearing test is today.
*The medical staff informed us we probably won't be bringing her home on Saturday. Until we actually have her home, we won't be posting anything more they say about a homecoming date.
Friday: I left work early today to go to the hospital to get Jeremy and meet with the home-care equipment people. They gave us our supplies for tending to the g-tube site, and the pump we will need for bolus feedings. They want us to stay over on Sunday night to have nurses on hand if we need them while we are using the new equipment.
She passed her hearing test today (which Aunt Paula was happy to hear)! They want to see her again at 18 months.
They tried her on "real world" formula today. She apparently doesn't like the taste (I have no idea where her pickiness comes from). They want to try it a few more times before they try using another one.
She has nothing on her face. She has been on room air for almost a week. The nurses got confident enough they removed her brown holding dots today.
Madelynn is 19 1/2 inches long and weighs 7 pounds 11 ounces.
Showing posts with label Weekly Update. Show all posts
Showing posts with label Weekly Update. Show all posts
February 16, 2010
February 8, 2010
Week Twenty One: February 8-14
Monday: No changes today. Her nurse today said only two babies have ever made her want to have children and Madelynn is one of them. I thought that was a nice thing to say.
Tuesday: Maddie is getting introduced to the bottle again. She has been on full feeds on a continuous flow for a couple of days now. They will start to compress her feeding time so her body will start knowing day feedings and night feeding. They will start with 23 hours of continuous flow with one hour off. Then 22 hours with 2 off, etc. She needs to get to the point where she is only on continuous feeds at night. Then we can do the car seat test, and hopefully home is the next step after that.
Thursday: Maddie is 7 pounds 2 ounces! Still no plans for a homecoming.
Saturday: Madelynn did really well on her swallow study. They are encouraged by what they see. They have reduced the amount of thickener in her formula. Her feeds are over a two hour period. We need to get her to a half hour. I brought in her car seat to do the test when they feel the time is getting close. She is getting her hearing test on Monday. She got to meet Miss Michelle today, who can't wait to have her over for play dates.
Tuesday: Maddie is getting introduced to the bottle again. She has been on full feeds on a continuous flow for a couple of days now. They will start to compress her feeding time so her body will start knowing day feedings and night feeding. They will start with 23 hours of continuous flow with one hour off. Then 22 hours with 2 off, etc. She needs to get to the point where she is only on continuous feeds at night. Then we can do the car seat test, and hopefully home is the next step after that.
Thursday: Maddie is 7 pounds 2 ounces! Still no plans for a homecoming.
Saturday: Madelynn did really well on her swallow study. They are encouraged by what they see. They have reduced the amount of thickener in her formula. Her feeds are over a two hour period. We need to get her to a half hour. I brought in her car seat to do the test when they feel the time is getting close. She is getting her hearing test on Monday. She got to meet Miss Michelle today, who can't wait to have her over for play dates.
February 3, 2010
Week Twenty
Wednesday: Madelynn is breathing on her own! She no longer has a nasal canula. She will be tank free when she comes home. It is a very exciting day.
Friday: Maddie is back on getting whisps of air. The medical team is hopeful she will come off the oxygen again. Never get too excited. Jeremy, Elly, and I took the gastronomy class today. It is less intimidating than the book made it out to be. It was wonderful to get some hands on experience, even though it was with pink Styrofoam pretending to be a baby belly. Maddie loves her aunt Elly. The medical staff have encouraged us to have her around more, so Elly can get used to her.
We had a phone conference with the Jordan School District developmental specialist, Jennifer, to go over our concerns with Maddie, and to develop a game plan for when she is discharged.
Saturday: I changed Madelynn's dressing for the first time today. I worry I am hurting her, but she is just uncomfortable and not in pain. It will take time getting used to it, and hopefully we will get better nurses than the one we had today to help us through.
Sunday: Maddie should be up to full feeds by mid-week. She will then need to pass her car seat test, and we have to pass our gastronomy tube test. She is getting whiffs of oxygen. Hopefully she will come off. She is now 6 pounds 14 ounces.
Friday: Maddie is back on getting whisps of air. The medical team is hopeful she will come off the oxygen again. Never get too excited. Jeremy, Elly, and I took the gastronomy class today. It is less intimidating than the book made it out to be. It was wonderful to get some hands on experience, even though it was with pink Styrofoam pretending to be a baby belly. Maddie loves her aunt Elly. The medical staff have encouraged us to have her around more, so Elly can get used to her.
We had a phone conference with the Jordan School District developmental specialist, Jennifer, to go over our concerns with Maddie, and to develop a game plan for when she is discharged.
Saturday: I changed Madelynn's dressing for the first time today. I worry I am hurting her, but she is just uncomfortable and not in pain. It will take time getting used to it, and hopefully we will get better nurses than the one we had today to help us through.
Sunday: Maddie should be up to full feeds by mid-week. She will then need to pass her car seat test, and we have to pass our gastronomy tube test. She is getting whiffs of oxygen. Hopefully she will come off. She is now 6 pounds 14 ounces.
January 25, 2010
Week Nineteen
Monday: The surgeons have scheduled Madelynn's gastronomy surgery on the 1st. They have decided not to do the nissen. Much to our relief. We are getting closer and closer to her coming home.
Thursday: Madelynn is 6 pounds 9 ounces. Her tests are showing she is low on Vitamin D. They are upped her Calcium and Vitamin D intake. We are getting closer to the surgery day. We will have to take classes on the gastronomy tube, and oxygen classes before we are allowed to take her home. She has to pass the car seat test, and we have to spend a night with her in the hospital.
Saturday: We received encouraging news today: Maddie may not need oxygen when she comes home. She is doing so well, they are thinking of taking her off it tonight. The surgery is still on for Monday, and she will be getting hernia surgery at the same time. Next Friday we have our g-tube class. Then it's just a couple of bedside classes, and then hopefully we will be able to send out Maddie's homecoming announcements!! We are getting so close!!
Sunday: We have been moved to a new room. Maddie's neighbor, James, has been there a while. He is getting teeth. His parents still have a positive attitude, and work with him on his development as they would if he were home. I am humbled by their strength, and situation. When we are at the end of our rope, wondering how much longer we have, we look around the unit and realize how truly blessed we are. Madelynn, for all of her scares, has come out of this experience with very few problems that normal micro-preemies have. She is a miracle. There is no other way to describe her. She has beaten her odds, and is leaving the NICU with just a gastronomy tube. While we are aware she is still at high risk for cerebral palsy, and will not know for sometime the neurological, and developmental complications she may have; we are a very lucky family. We will get through, and deal with whatever we have to, but it is well worth it to have her in our lives today.
She is 6 pounds 10 ounces. She is second on the surgeon's schedule tomorrow. She will have her gastronomy tube placed, and her hernia fixed. She will have her MRI Tuesday morning, and we will get an update on the spots on her brain.
Thursday: Madelynn is 6 pounds 9 ounces. Her tests are showing she is low on Vitamin D. They are upped her Calcium and Vitamin D intake. We are getting closer to the surgery day. We will have to take classes on the gastronomy tube, and oxygen classes before we are allowed to take her home. She has to pass the car seat test, and we have to spend a night with her in the hospital.
Saturday: We received encouraging news today: Maddie may not need oxygen when she comes home. She is doing so well, they are thinking of taking her off it tonight. The surgery is still on for Monday, and she will be getting hernia surgery at the same time. Next Friday we have our g-tube class. Then it's just a couple of bedside classes, and then hopefully we will be able to send out Maddie's homecoming announcements!! We are getting so close!!
Sunday: We have been moved to a new room. Maddie's neighbor, James, has been there a while. He is getting teeth. His parents still have a positive attitude, and work with him on his development as they would if he were home. I am humbled by their strength, and situation. When we are at the end of our rope, wondering how much longer we have, we look around the unit and realize how truly blessed we are. Madelynn, for all of her scares, has come out of this experience with very few problems that normal micro-preemies have. She is a miracle. There is no other way to describe her. She has beaten her odds, and is leaving the NICU with just a gastronomy tube. While we are aware she is still at high risk for cerebral palsy, and will not know for sometime the neurological, and developmental complications she may have; we are a very lucky family. We will get through, and deal with whatever we have to, but it is well worth it to have her in our lives today.
She is 6 pounds 10 ounces. She is second on the surgeon's schedule tomorrow. She will have her gastronomy tube placed, and her hernia fixed. She will have her MRI Tuesday morning, and we will get an update on the spots on her brain.
January 18, 2010
Week Eighteen
Monday: She isn't taking her feedings as well as we would like, so it appears the surgery will happen once she is 3 kilos. Her eyes get evaluated on Wednesday. That is something I keep forgetting to mention as a part of the "coming home" check list. Babies cannot be on 100% oxygen until their eyes are fully developed. Babies cannot come home on mixed oxygen. So...we have to also wait for Maddie's eyes to mature for her to come home too. She is now too big for preemie clothes, but is drowns in her newborn stuff.
Wednesday: We are waiting to her back from the optometrist on the development of Maddie's eyes. She is now 6 pounds 2 ounces.
Thursday: Maddie's eyes are fully mature. One thing down!
Friday: She is four months old.
Saturday: Today we bid farewell to one of Maddie's neighbors, Sophia. Her parents were able to take her home after being in the NICU for 8 weeks. We are very excited for them, and wish them all the very best.
We were told Maddie will be getting the surgery in the next ten days or so, and will be home a week or so after. There is an end in sight. She is now 6 pounds 8 ounces.
Sunday: Madelynn has been have reflux pretty severely again. The medical team think in addition to the gastronomy tube surgery she will also need nissen fundoplication surgery. This is when surgeons wrap the upper part of the stomach to the lower part of the esophagus. Here is a diagram. It prevents her from spitting up, burping, or vomiting. She will have this her whole life. If she gets the flu she will not be able to vomit. She is not allowed to have any carbonation. She will be able to eat solid foods, but has to make sure she chews it very well. It will make her feel full more quickly, and thus won't gain extra weight. Which is a good thing considering she has my genes. :o)
She got a visit from her grandma Myker today. Her grandpa Rick was sick, so he stayed out in the lobby. Other than the aforementioned items, there is nothing else to report.
Wednesday: We are waiting to her back from the optometrist on the development of Maddie's eyes. She is now 6 pounds 2 ounces.
Thursday: Maddie's eyes are fully mature. One thing down!
Friday: She is four months old.
Saturday: Today we bid farewell to one of Maddie's neighbors, Sophia. Her parents were able to take her home after being in the NICU for 8 weeks. We are very excited for them, and wish them all the very best.
We were told Maddie will be getting the surgery in the next ten days or so, and will be home a week or so after. There is an end in sight. She is now 6 pounds 8 ounces.
Sunday: Madelynn has been have reflux pretty severely again. The medical team think in addition to the gastronomy tube surgery she will also need nissen fundoplication surgery. This is when surgeons wrap the upper part of the stomach to the lower part of the esophagus. Here is a diagram. It prevents her from spitting up, burping, or vomiting. She will have this her whole life. If she gets the flu she will not be able to vomit. She is not allowed to have any carbonation. She will be able to eat solid foods, but has to make sure she chews it very well. It will make her feel full more quickly, and thus won't gain extra weight. Which is a good thing considering she has my genes. :o)
She got a visit from her grandma Myker today. Her grandpa Rick was sick, so he stayed out in the lobby. Other than the aforementioned items, there is nothing else to report.
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