October 25, 2009
October 24, 2009
Holding Madelynn
The nurse practitioner wrote an order to allow us to hold Maddie twice a week. We have chosen Saturdays and Wednesdays. Today was the first day I had the opportunity to hold her. Jeremy and I were both moved by the experience. It was a relief; finally, after six weeks of staring at our baby through glass we get to properly hold our child.
October 21, 2009
Random Matthew Cuteness
Our little nephew, Matthew, is getting big. He always makes us laugh with the cute things he does. We cannot wait until Matthew can meet Maddie, and they can play together.
He's so lazy! He can't keep his head up in the Johnny Jump Up. Although he is getting the hang of jumping when he wants to.
I needed to hold a baby. Elly is so great about letting me cuddle with Matthew when I am miss Madelynn. (Which is always!)
He's so lazy! He can't keep his head up in the Johnny Jump Up. Although he is getting the hang of jumping when he wants to.
I needed to hold a baby. Elly is so great about letting me cuddle with Matthew when I am miss Madelynn. (Which is always!)
October 20, 2009
Week Five October 19 -25
Monday: Madelynn is four weeks old today. She weights one pound eleven ounces, and is thirteen and a half inches long. She has gained nine ounces, and 1 3/4 inches since birth. They increased her feedings to 10 cc every three hours. Other than that not much has changed. In our world sometimes no news is good news.
Tuesday: Her feedings have been increased to 12 cc. She received another blood transfusion today. Her weight is up to 1 lb 12 ounces. She got a great visit from her daddy. He swears she smiles. The nurse didn't have a lot of news for today.
Wednesday: She is one month old today! Her present: No more tubes and IVs on her arms! Her little arms are free! She has an oxygen tube in her throat, and her feeding tube goes to her gut. She is getting 14 cc every three hours. Her progress is amazing. The nurse is confident we will be able to hold her on Friday.
Thursday: They are weening Maddie off of her ventilator. Slowly but surely. Jeremy went to visit her today. I am sick again. No voice, swollen glands. She is up to 15 cc. No other news to report.
Friday: Nothing new to report. She is stable and growing.
Saturday: Today's events get their very own blog!
Sunday: She is stable. They are hoping to have her on a CPAP soon. This is a nasal ventilator for a lack of a better description. It's amazing how small they can make things. She had a visit from Grandma Myker and Grandpa Rick. She was awake and active. She is definitely a daddy's girl. Nothing else to really report today.
Tuesday: Her feedings have been increased to 12 cc. She received another blood transfusion today. Her weight is up to 1 lb 12 ounces. She got a great visit from her daddy. He swears she smiles. The nurse didn't have a lot of news for today.
Wednesday: She is one month old today! Her present: No more tubes and IVs on her arms! Her little arms are free! She has an oxygen tube in her throat, and her feeding tube goes to her gut. She is getting 14 cc every three hours. Her progress is amazing. The nurse is confident we will be able to hold her on Friday.
Thursday: They are weening Maddie off of her ventilator. Slowly but surely. Jeremy went to visit her today. I am sick again. No voice, swollen glands. She is up to 15 cc. No other news to report.
Friday: Nothing new to report. She is stable and growing.
Saturday: Today's events get their very own blog!
Sunday: She is stable. They are hoping to have her on a CPAP soon. This is a nasal ventilator for a lack of a better description. It's amazing how small they can make things. She had a visit from Grandma Myker and Grandpa Rick. She was awake and active. She is definitely a daddy's girl. Nothing else to really report today.
October 18, 2009
Week Four Pictures
Because our illness being passed around the family we were only able to get photos of Maddie on one Day. Please enjoy Week Four Day Six. :o) (They are cell pics. Sorry.)
October 12, 2009
Week Four October 12-18
Monday: Madelynn is three weeks old today. Gestationally 29 and 3. She was placed back on feedings yesterday, but they have since stopped because they cannot hear any bowel sounds. She is back on the oxygen ventilator, as it does not appear her lungs are strong enough to go all day and night without it. She is able to go a few hours without it. Maddie was transferred back to IMC today around three. They are going to be running tests and x-rays on her to make sure the lines are in and there aren't any infections in her intestines.
Tuesday: Another sick day without seeing Maddie. She has grown another half inch. She is now thirteen and a half inches. She had a really good day. She is down on her oxygen going from 22% - 24%. They are talking about starting feedings again tomorrow. They can hear some bowel sounds, but not what they would "good" bowel sounds. This is why they wanted to wait another day. The medical staff didn't have a lot of updates because other than she is doing amazing!
Wednesday: Another sick day. The NICU called and told us her Billy Reubens are high. They don't know why because its abnormal for a child her age (24 days) to have these. They are treating her with the lights. She has gone back on feedings. Hopefully they will continue to hear bowel sounds. They have started her are a new type of ventilator. She still has an oxygen tube, but this is supposed to help her ween off of it and go to a CPAP. She is down in her weight. 700 grams (1 pound 8 ounces). She was up to 1 pound 12 ounces. It's expected. Hopefully now with her heart issue taken care of she can start gaining weight and improving. She is a fighter. We are so grateful for our little girl. She truly is our miracle child.
Thursday: Another sick day. The NICU didn't have anything to report for us today. Maddie is doing really well. We need more uneventful days!
Friday: Finally!! I got to see her today. She looks great. Her little personality is coming along. She knows what she likes and doesn't, and getting her diaper changed is not an activity she likes. She locked her knees on me, and it was very difficult to get her diaper on. She is 13 1/2 inches long. Her c-billy reubens are down. We are waiting for her liver, and abdomen test results to get back to see if they are what is causing the peaks. She is doing really, really well. They think we may be able to hold her next week. Another uneventful day for her. Hopeful the rest of the stay will be like today, and she can just start growing healthy and strong.
Saturday: Her c-billies are continuing to decline. Her liver and abdomen ultrasound came back normal. She is really making improvements every day. The medical staff has increased her feedings to 6 cc four times a day. They hope she will start to gain weight. Maddie does have the beginning stages of Chronic Lung Disease. We will probably bring her home on oxygen. She may have asthma when she is older. They will be doing her eye exam on Thursday. They need to make sure her retina are going properly. If they are not it could cause blindness; however, the nurse practitioner assured me that if caught early enough they can do laser surgery to prevent blindness. Maddie weight 1 pound ten ounces. They will measure her length sometime tomorrow night.
Sunday: Maddie weighs in at 1 pound 11 ounces. We did her cares again. It was her first poop filled diaper. As I am attempting to properly clean her up, she starts having another bowel movement. I was able to catch it before it messed up her snuggley. Then as I was reaching for the diaper, Madelynn, pooped again. This time all over she snuggley. We had to change out her new diaper, plus her isolette bed cover and snuggley. We really found all of this very funny. She would cross her legs at her ankles, and not allow us to pull her legs apart to get the diaper up on her. Everything is looking up for Maddie. She is getting 7 cc of milk a feeding. We hope this will help her continue to grow.
Tuesday: Another sick day without seeing Maddie. She has grown another half inch. She is now thirteen and a half inches. She had a really good day. She is down on her oxygen going from 22% - 24%. They are talking about starting feedings again tomorrow. They can hear some bowel sounds, but not what they would "good" bowel sounds. This is why they wanted to wait another day. The medical staff didn't have a lot of updates because other than she is doing amazing!
Wednesday: Another sick day. The NICU called and told us her Billy Reubens are high. They don't know why because its abnormal for a child her age (24 days) to have these. They are treating her with the lights. She has gone back on feedings. Hopefully they will continue to hear bowel sounds. They have started her are a new type of ventilator. She still has an oxygen tube, but this is supposed to help her ween off of it and go to a CPAP. She is down in her weight. 700 grams (1 pound 8 ounces). She was up to 1 pound 12 ounces. It's expected. Hopefully now with her heart issue taken care of she can start gaining weight and improving. She is a fighter. We are so grateful for our little girl. She truly is our miracle child.
Thursday: Another sick day. The NICU didn't have anything to report for us today. Maddie is doing really well. We need more uneventful days!
Friday: Finally!! I got to see her today. She looks great. Her little personality is coming along. She knows what she likes and doesn't, and getting her diaper changed is not an activity she likes. She locked her knees on me, and it was very difficult to get her diaper on. She is 13 1/2 inches long. Her c-billy reubens are down. We are waiting for her liver, and abdomen test results to get back to see if they are what is causing the peaks. She is doing really, really well. They think we may be able to hold her next week. Another uneventful day for her. Hopeful the rest of the stay will be like today, and she can just start growing healthy and strong.
Saturday: Her c-billies are continuing to decline. Her liver and abdomen ultrasound came back normal. She is really making improvements every day. The medical staff has increased her feedings to 6 cc four times a day. They hope she will start to gain weight. Maddie does have the beginning stages of Chronic Lung Disease. We will probably bring her home on oxygen. She may have asthma when she is older. They will be doing her eye exam on Thursday. They need to make sure her retina are going properly. If they are not it could cause blindness; however, the nurse practitioner assured me that if caught early enough they can do laser surgery to prevent blindness. Maddie weight 1 pound ten ounces. They will measure her length sometime tomorrow night.
Sunday: Maddie weighs in at 1 pound 11 ounces. We did her cares again. It was her first poop filled diaper. As I am attempting to properly clean her up, she starts having another bowel movement. I was able to catch it before it messed up her snuggley. Then as I was reaching for the diaper, Madelynn, pooped again. This time all over she snuggley. We had to change out her new diaper, plus her isolette bed cover and snuggley. We really found all of this very funny. She would cross her legs at her ankles, and not allow us to pull her legs apart to get the diaper up on her. Everything is looking up for Maddie. She is getting 7 cc of milk a feeding. We hope this will help her continue to grow.
October 8, 2009
Getting Creative
With all the stress of the last two and a half weeks we decided to do a craft project. We found letters at Roberts Craft and bought her name. We found scrapbook flower glitter paper in pink and lavender. We decoupaged the papers on and placed lacquer over the paper. The letters will be hung by matching thread on one of her walls. The colors will be complimentary to the Care Bears theme.
It was a nice way to spend time together while our baby recovered from surgery. She is doing really well. Her oxygen has stopped fluctuating, and is now resting comfortably at 31%. Madelynn is being sedated during her recovery. All signs point to a speedy recuperation.
October 6, 2009
Pictures by the NICU Nurses
The nurses in the NICU take photos for us of things they think are important or they think are cute. They give us a DVD, which is updated every couple of days or so. They place it in our drawer in Maddie's pod, and we get to take it home and upload it to our computer. We have made a slide of the photos they have taken so far. Some photos are repeats from previous slides as they were side by side with me or Jeremy when we were taking photos.
October 5, 2009
Week Three October 5-11
Monday: Madelynn is two weeks old, and gestationally 28 weeks and 3 days. We are going to call this a good day. Madelynn's intestine looks a lot better today. She will be on antibiotics until Friday. She has her heart echo tomorrow, and on Friday they will do a head ultrasound. These are just routine, I guess. I changed her diaper for the first time, and took her temperature. She was sprawled out again. She looked comfortable. She doesn't like her arms tucked in so I think she enjoys it when they let her lie like that.
Tuesday: We found out her murmur is open. It looks like she will need heart surgery to permantely close it. The medical staff seems to think most of her problems stem from her heart problem. She used to use only 21% oxygen, but now because fluid is leaking into her lungs she needs almost 70%. The NECK scare they believe may have been caused by the body not directing the oxygen properly because of the hole in her heart. They will let us know tomorrow what they when they will move her to Primary Childrens and when her surgery will be.
Wednesday: Madelynn was transfered by ambulance to Primarys today. There was an infection scare this morning, but the labs came back normal. The medical staffs at the two hospitals felt she was stable enough for the transfer. They loaded her up into a portable isolate and took off. Madelynn gets pissy when she is messed with too much. She frowns at everyone and her stats drop. She's a pretty funny little girl to watch with other people. We had to inform the new nursing staff of her idiosyncrasies: She doesn't like her arms tucked in, don't touch her if you don't have to and her favorite side to lay on is her left. They needed consent for another transfusion, this will be number 8 for her. They were unable to tell us if they surgery will be performed tomorrow or Friday. The Primary Medical staff will meet for rounds tomorrow with the cardiologist, and they will decide to either get an additional heart echo or go into surgery. We wait for the call.
Thursday: The call came at nine this morning. They are going to do the surgery at eleven. Jeremy and I went to the hospital, visited with Maddie, and signed the consent forms for surgery. Then we waited. The surgery lasted an hour, and she sailed through it like a trouper. Her lung partially collapsed, but they are not worried about it. She has to have tubes in her for a while. The Primary's medical staff said her vitals are excellent for a preemie who had just gone through surgery. She is heavily medicated, and sleeping through the day. I forgot my camera, so I apologize for the cell phone pictures.
Friday: Jeremy and I are both sick so we are not allowed to see Madelynn. I left work to go to the hospital, and then I could not go in. We've been calling the NICU all day to get updates, and her paternal grandparents, Grandpa Rick and Grandma Myker paid her a visit. Maddie pulled out her oxygen tube today. She decided she didn't like it. She gets pissy when she does not like something. They put her on nasal oxygen, not unlike a CPAP, but smaller. She did well breathing on her own for two hours, then she got tired, so they intibated her again. She got the chest tubes taken out today, which was a surpirse. We thought they would be in there for a while. I can't say it enough, we have been blessed with a very strong, resilient daughter. The medical staff keeps telling us she is doing extremely well given her circumstances.
Saturday: Day Two of being sick, and not seeing Maddie. It's really hard. We called for check ups. She is doing well on her oxygen, and they are going to start her back on feedings. They hope to be able to transfer her back to IMC on Monday. She was awake for most of the day staring at the nurses.
Sunday: Grandma and Grandpa Jones went and visited Maddie today, and came over with updates. The nurses have found she likes to be on her tummy. Madelynn is more stabilized this way.
She is on the nasal oxygen. She likes her purple binkie they have given her to help push the air to her lungs, and not escape out her mouth.
Without the oxygen tube in her mouth one can she her expressions. She seems to smile.
She had the hiccups today.
She tried to suck her thumb today, but the tubes prevented her from succeeding.
She made some noise.
Tuesday: We found out her murmur is open. It looks like she will need heart surgery to permantely close it. The medical staff seems to think most of her problems stem from her heart problem. She used to use only 21% oxygen, but now because fluid is leaking into her lungs she needs almost 70%. The NECK scare they believe may have been caused by the body not directing the oxygen properly because of the hole in her heart. They will let us know tomorrow what they when they will move her to Primary Childrens and when her surgery will be.
Wednesday: Madelynn was transfered by ambulance to Primarys today. There was an infection scare this morning, but the labs came back normal. The medical staffs at the two hospitals felt she was stable enough for the transfer. They loaded her up into a portable isolate and took off. Madelynn gets pissy when she is messed with too much. She frowns at everyone and her stats drop. She's a pretty funny little girl to watch with other people. We had to inform the new nursing staff of her idiosyncrasies: She doesn't like her arms tucked in, don't touch her if you don't have to and her favorite side to lay on is her left. They needed consent for another transfusion, this will be number 8 for her. They were unable to tell us if they surgery will be performed tomorrow or Friday. The Primary Medical staff will meet for rounds tomorrow with the cardiologist, and they will decide to either get an additional heart echo or go into surgery. We wait for the call.
Thursday: The call came at nine this morning. They are going to do the surgery at eleven. Jeremy and I went to the hospital, visited with Maddie, and signed the consent forms for surgery. Then we waited. The surgery lasted an hour, and she sailed through it like a trouper. Her lung partially collapsed, but they are not worried about it. She has to have tubes in her for a while. The Primary's medical staff said her vitals are excellent for a preemie who had just gone through surgery. She is heavily medicated, and sleeping through the day. I forgot my camera, so I apologize for the cell phone pictures.
Friday: Jeremy and I are both sick so we are not allowed to see Madelynn. I left work to go to the hospital, and then I could not go in. We've been calling the NICU all day to get updates, and her paternal grandparents, Grandpa Rick and Grandma Myker paid her a visit. Maddie pulled out her oxygen tube today. She decided she didn't like it. She gets pissy when she does not like something. They put her on nasal oxygen, not unlike a CPAP, but smaller. She did well breathing on her own for two hours, then she got tired, so they intibated her again. She got the chest tubes taken out today, which was a surpirse. We thought they would be in there for a while. I can't say it enough, we have been blessed with a very strong, resilient daughter. The medical staff keeps telling us she is doing extremely well given her circumstances.
Saturday: Day Two of being sick, and not seeing Maddie. It's really hard. We called for check ups. She is doing well on her oxygen, and they are going to start her back on feedings. They hope to be able to transfer her back to IMC on Monday. She was awake for most of the day staring at the nurses.
Sunday: Grandma and Grandpa Jones went and visited Maddie today, and came over with updates. The nurses have found she likes to be on her tummy. Madelynn is more stabilized this way.
She is on the nasal oxygen. She likes her purple binkie they have given her to help push the air to her lungs, and not escape out her mouth.
Without the oxygen tube in her mouth one can she her expressions. She seems to smile.
She had the hiccups today.
She tried to suck her thumb today, but the tubes prevented her from succeeding.
She made some noise.
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