When you read this message, please pray that the home health company will be in today to do our oxygen and monitor training. It will only take 20 minutes, and that's all we're waiting on to go home. But the NP said that the company is swamped, and it may not be today. I do not want to sit here another day waiting for a 20 minute training.
Ok, I need patience, and I NEED IT NOW! :)
Thursday, July 31, 2008
Wednesday, July 30, 2008
Then and Now
Hi, everyone. We're sitting in NICU with Maddy tonight, and I have the computer for a change. I realize that it's been a while since I reported in. To be honest there wasn't much to report until today. Earlier this week, we were waiting for Maddy to pick up some weight, since she lost a few ounces once they took her off all her lipids, etc. But Tuesday night she was up one ounce and tonight an ounce and a half, so it sounds like....WE'RE GOING HOME TOMORROW! I was so depressed yesterday, because it seemed like we kept adding another day, and I'm sick to death of being up here. Not knowing when she might be released is harder at this end than at the beginning when I knew she wasn't going home for a couple of weeks. She's going home on oxygen, and will be re-evaluated in a month, and hopefully she'll get to come off at that point.
I thought I'd add a couple pictures to this post to show Maddy's progress in the last two weeks. The first is the first week...the second was just a couple days ago. Can you believe the difference?? I'll add more photos once I'm home, but Glen has been asking me for the computer at a rate of about, oh, once every 30 seconds or so, so I'd better get off! :)
Thanks so much for all your love and prayers and caring and sharing these last few weeks! We're forever grateful.
I thought I'd add a couple pictures to this post to show Maddy's progress in the last two weeks. The first is the first week...the second was just a couple days ago. Can you believe the difference?? I'll add more photos once I'm home, but Glen has been asking me for the computer at a rate of about, oh, once every 30 seconds or so, so I'd better get off! :)
Thanks so much for all your love and prayers and caring and sharing these last few weeks! We're forever grateful.
Sunday, July 27, 2008
Hip, Hip, Horray!
My Mom is coming tomorrow! Hopefully Maddy will be home soon, too, and I will surely appreciate having my mom to keep things running smoothly during the transition! Grandma and Granddad Cessna will be driving her out, and then Dad will come pick her up in a week or a little more. AND, my brother will be driving through in a week, and I'll get to meet my new little nephew, Daniel! So excited.
More thanks--Diana for offer of laundry service; and Cara for offer of massage for baby Maddy. Both are so appreciated more than you know. And Craig and Cindy--you made the day for my girls with their surprises!
Pam
More thanks--Diana for offer of laundry service; and Cara for offer of massage for baby Maddy. Both are so appreciated more than you know. And Craig and Cindy--you made the day for my girls with their surprises!
Pam
Friday, July 25, 2008
Reports
Hi, everyone. Thanks for being patient for this update! And for pics...I haven't had a computer besides the hospital one, and I can't download pics to it.
Carli got to hold Maddy for the first time today. She was thrilled. The nurse took a picture and printed two copies, one for us, and one for Carli.
Sounds like Maddy will be released on Tuesday, "no later than Wednesday," though I know that things could change between now and then. Just trusting they don't! Please pray that Maddy will quit dropping her O2 levels so they can take her off the oxygen.
One of the "micro" chromosome tests came back positive for DiGeorge's syndrome. This is nothing life threatening, thank God. She may have a lower immune system, and her calcium levels are low, so they're starting on calcium. They're not sure if the SB was a complicating issue with the DiGeorge's, or if she just hit the jackpot, so to speak, and ended up with two unrelated issues.
Maddy's been a busy girl. She also had a voiding cystourethrogram today, and she has grade 2 and grade 3 reflux from her bladder to her kidneys. The urologist has ordered her on amoxycillin, since that would cause kidney infections pretty easily.
Ok, some positives!! Mommy is learning to catheterize Maddy! It's not nearly as scary as it looks or sounds, fortunately. The main pain is that in the hospital it's a sterile procedure...at home it will be a clean procedure. I had no idea how much work goes into sterile procedures. Benjy and Lisa are laughing at me by now, I'm sure! :)
More good news: The echo came back with nothing more than a patent ______ valley, which causes the murmur. This should close on it's own, and is very common. There are no other defects, which is really good news, since one of the presenting symptoms of DiGeorge's is heart defects.
Even better news: The optic nerve is NORMAL, effectively ruling out septic optic dysplasia that they were worried about before! This is a huge PRAISE THE LORD, for sure.
More: The overall chromosome test, the one that looks at the big picture for missing chromosomes and proper structure came back just fine. They'd told me when they diagnosed Maddy that SB can be a presenting symptom of Trisomy 13 or 18, both of which are fatal. While they were pretty sure even with just an ultrasound that this wasn't the case, or even at birth, they couldn't rule it out until the results of this test were back. I can't say that I've sat around and stewed about that test, but when I did think about it, I was anxious. I'm so thankful for this answer to prayer.
And last, and yes, this time the least, we were able to borrow a brand new car bed from Riley Children's. This special car seat will allow us to transport Maddy without putting undo pressure on the kyphosis. They didn't charge us any fees for the loan, so no more money out for that! We're hoping to talk to the orthopedic doctor about the kyphosis when he comes on Monday. Dr. Young had said that it may be easier to do surgery on the kyphosis during infancy rather than later, and since we're already having to deal with positioning both in car seats and in bed, I imagine that he's right.
Are you bored to tears yet? I'll just add one more thing. People have asked if Maddy is paralyzed or not. By all appearances, it seems that she is from her bellybutton down. She's had IVs and shots in her feet and legs, not to mention cathing every six hours, and she doesn't make a peep. She has no involuntary movement in her legs that anyone has seen. Of course she'll be in a lot of therapy, so she'll get every opportunity to go beyond what it seems now. And of course God may have other plans for her. But whatever He has in store for her, we're ok and very used to the idea. We know she has a special purpose that He wants her to find, as the song goes.
Ok, really, I'm signing off now! Thanks for sticking with me through all the details!
Pam
Carli got to hold Maddy for the first time today. She was thrilled. The nurse took a picture and printed two copies, one for us, and one for Carli.
Sounds like Maddy will be released on Tuesday, "no later than Wednesday," though I know that things could change between now and then. Just trusting they don't! Please pray that Maddy will quit dropping her O2 levels so they can take her off the oxygen.
One of the "micro" chromosome tests came back positive for DiGeorge's syndrome. This is nothing life threatening, thank God. She may have a lower immune system, and her calcium levels are low, so they're starting on calcium. They're not sure if the SB was a complicating issue with the DiGeorge's, or if she just hit the jackpot, so to speak, and ended up with two unrelated issues.
Maddy's been a busy girl. She also had a voiding cystourethrogram today, and she has grade 2 and grade 3 reflux from her bladder to her kidneys. The urologist has ordered her on amoxycillin, since that would cause kidney infections pretty easily.
Ok, some positives!! Mommy is learning to catheterize Maddy! It's not nearly as scary as it looks or sounds, fortunately. The main pain is that in the hospital it's a sterile procedure...at home it will be a clean procedure. I had no idea how much work goes into sterile procedures. Benjy and Lisa are laughing at me by now, I'm sure! :)
More good news: The echo came back with nothing more than a patent ______ valley, which causes the murmur. This should close on it's own, and is very common. There are no other defects, which is really good news, since one of the presenting symptoms of DiGeorge's is heart defects.
Even better news: The optic nerve is NORMAL, effectively ruling out septic optic dysplasia that they were worried about before! This is a huge PRAISE THE LORD, for sure.
More: The overall chromosome test, the one that looks at the big picture for missing chromosomes and proper structure came back just fine. They'd told me when they diagnosed Maddy that SB can be a presenting symptom of Trisomy 13 or 18, both of which are fatal. While they were pretty sure even with just an ultrasound that this wasn't the case, or even at birth, they couldn't rule it out until the results of this test were back. I can't say that I've sat around and stewed about that test, but when I did think about it, I was anxious. I'm so thankful for this answer to prayer.
And last, and yes, this time the least, we were able to borrow a brand new car bed from Riley Children's. This special car seat will allow us to transport Maddy without putting undo pressure on the kyphosis. They didn't charge us any fees for the loan, so no more money out for that! We're hoping to talk to the orthopedic doctor about the kyphosis when he comes on Monday. Dr. Young had said that it may be easier to do surgery on the kyphosis during infancy rather than later, and since we're already having to deal with positioning both in car seats and in bed, I imagine that he's right.
Are you bored to tears yet? I'll just add one more thing. People have asked if Maddy is paralyzed or not. By all appearances, it seems that she is from her bellybutton down. She's had IVs and shots in her feet and legs, not to mention cathing every six hours, and she doesn't make a peep. She has no involuntary movement in her legs that anyone has seen. Of course she'll be in a lot of therapy, so she'll get every opportunity to go beyond what it seems now. And of course God may have other plans for her. But whatever He has in store for her, we're ok and very used to the idea. We know she has a special purpose that He wants her to find, as the song goes.
Ok, really, I'm signing off now! Thanks for sticking with me through all the details!
Pam
Wednesday, July 23, 2008
Wednesday update
When I sent the email out earlier, I forgot to include an update on Maddy. We're working on coming home. She has to be off her oxygen, first, and that's the main hurdle we need to clear. We're working on weaning her off of that. So put that on your prayer list! The orthopedic doctor should be in tomorrow for an eval, although nothing will be done about her feet right away. Urology has to eval, too, before coming home, I think, and the PT/OT will do a complete eval tomorrow. She also has an eye exam and routine echo tomorrow. So busy day...pray that all goes well with the exams. Oh, and we get to learn the joys of catheterizing, and that should happen soon. So who knows--Friday or Saturday we'll be home, maybe?? We'll see! She's doing well laying on her back and shunt side. They have a little doughnut ring to help protect the kyphosis on her back. We may need to buy a special mattress for her--the same one that the hospital has used for her, called a z-flo. It's awesome and would help alot. Insurance doesn't pay for it, but the cost would be worth it in the long run--if the supplying company will even sell one to us. They don't sell to the public unless it's for a very good reason, and Maddy has one. It's not just for her to have a dreamy mattress (it's like an extra comfortable Temprapedic mattress, and man, I want one for me! Ask anyone who has felt this one, and they'll tell you!), but it's to protect the protuberance from breaking down or from pressure sores. So another thing to pray for--that they'll sell us one!
Ok, that's it, I think! Thanks so much for your continuing prayer and concern...I have no doubt that your prayers have been heard and answered.
If you think about it, I'd really appreciate you adding two moms and their babies to your prayer lists as well. Both I've met because of Maddy's SB. Audrey was born in December with SB, and had been doing very well until earlier this summer when the Arnold Chiari II malformation caused her to stop breathing. She had to have brain surgery to correct the situation and was recovering nicely. Now her shunt has malfunctioned and she's having to go in for another surgery on Friday. Please pray for Audrey and her family. I know it can't be easy to have continued trouble.
Second, please pray for Dana and her little girl Giana Grace, born Monday. You can read about Giana at http://www.caringbridge.org/visit/ourgirl. Scroll down to see the journal entry. Sounds like she has a rough road ahead, some of which is a surprise to the parents.
Dana and Alicia--praying for you an the babies.
Pam
Ok, that's it, I think! Thanks so much for your continuing prayer and concern...I have no doubt that your prayers have been heard and answered.
If you think about it, I'd really appreciate you adding two moms and their babies to your prayer lists as well. Both I've met because of Maddy's SB. Audrey was born in December with SB, and had been doing very well until earlier this summer when the Arnold Chiari II malformation caused her to stop breathing. She had to have brain surgery to correct the situation and was recovering nicely. Now her shunt has malfunctioned and she's having to go in for another surgery on Friday. Please pray for Audrey and her family. I know it can't be easy to have continued trouble.
Second, please pray for Dana and her little girl Giana Grace, born Monday. You can read about Giana at http://www.caringbridge.org/visit/ourgirl. Scroll down to see the journal entry. Sounds like she has a rough road ahead, some of which is a surprise to the parents.
Dana and Alicia--praying for you an the babies.
Pam
Lessons in friendship
Last night after Glen got home, he called me, saying, "I'm can't believe I'm getting ready to tell you this but...." The front flower bed had been completely re-landscaped---shrubs and bushes pulled, flowers and plants put in, plastic down and mulch (or pebbles--can't tell from the pics), too. The gutters were fixed, the trees cut back so that no branches were on the roof. The back yard held more surprises: powerwashed deck, new swingset for the girls and new double seat swing for adults, overgrowth on the other side of the fence by the creek completely cleared, bushes pruned.
Our team of lanscaping angels included 16 people from our church who just wanted to do something special for us. The choir collected money, and a professional landscraper from church gave materials at cost (and they think a lot more than that).
We are so overwhelmed. There is no way that we can ever pay it back (we are NOT landscapers), but we've determined that whenever we have the chance we will "Pay it forward." So many times, I'm guilty of telling someone to let me know what I can do rather than jumping in and helping where I see a need. Lesson learned--no one likes to ask for help, but appreciates it beyond words when something gets done.
For those of you who don't know me, you may think that I'd get upset at someone coming and doing a major project like that without my ok or imput. NEVER FEAR! We've been trying to figure out what in the world we should do with our yard. Every year we say that this is the year, but we never do it because we don't know where to start or what to do with it. This year our major project was getting new carpet in the house, so we'd decided that next year, we'd just call in a professional to spruce it up. I hated the bushes. I didn't enjoy sitting out with the girls while they were playing because I didn't like looking at all my shortcomings. What a wonderful gift. Janet (my pastor's wife) knew all this from a conversation we had once when she dropped off her little girl to play, and boy, did she take it and run with it! She had originally planned to just bring Pastor over to work on it together, but in the end the ideas kept coming and more and more people got involved. One new guy from church enjoys community projects and wanted to be involved--and he was a God-send. His job in college was to put together swingsets, etc, when people bought them from the store he worked in. Rather than taking him all day, like the reviews for the swingset suggested it might take (though the end result was worth it, according to consumers), it took him an hour and a half by himself.
What a witness to the community, too. We've struggled with building relationships with our neighbors. We've taken cookies, tried to be as friendly as possible, but people have their own lives that were established before we moved in, and it's been hard to build any bridges. Alot of the neighbors stood out and watched the action. The neighbor across the street kept remarking about the pastor mowing the yard--"You're sure he's the pastor? A pastor mowing someone's yard???" He ended up having another guy from our church work on his carburator, and in the end, he was invited to church. None of these neighbors knew that there were problems with our precious baby, so I'm interested to see if they show any interest again when we get home.
Other people have taken so much time out to take care of our kids--we've gotten so many offers! Our SS class is bringing meals when we come home from the hospital. Lisa Bryant brought a video camera, and the class pitched in with money towards that! (I'm telling you what, we're spoiled rotten!) And though this landscaping project doesn't seem like it's connected to Maddy's birth, it is...probably more than they even knew. We've been trying to slowly get our house ready for resale. We've outgrown it, especially now that wheelchairs will be an issue. We are hoping to find something more suitable starting in a couple years from now. Landscaping was one thing that we knew would make a difference, and was on our list. Isn't that amazing, that they pinpointed something that, though it may seem like something that's not an absolute necessity (more of a fun gift), it's somthing that will help us on our journey with Maddy.
Special thanks to the choir for passing the hat for money, to Janet Leeder for brainstorming and getting other people invovled. And to all the landscaping heroes: Mark Miller (professional landscaper), Jed and Alyssa, Pat and Jim Hiatt, Danny Bryant, Jeff Reed, Andy Carpenter, Joyce Ayers, David Blachly, Pastor Leeder, Tori and Barry Brantly, James (?) and Kevin Cox. Wow...thanks so much for your time and expertise, your sweat and hard work! We love you and we feel so loved and cared for.
Our team of lanscaping angels included 16 people from our church who just wanted to do something special for us. The choir collected money, and a professional landscraper from church gave materials at cost (and they think a lot more than that).
We are so overwhelmed. There is no way that we can ever pay it back (we are NOT landscapers), but we've determined that whenever we have the chance we will "Pay it forward." So many times, I'm guilty of telling someone to let me know what I can do rather than jumping in and helping where I see a need. Lesson learned--no one likes to ask for help, but appreciates it beyond words when something gets done.
For those of you who don't know me, you may think that I'd get upset at someone coming and doing a major project like that without my ok or imput. NEVER FEAR! We've been trying to figure out what in the world we should do with our yard. Every year we say that this is the year, but we never do it because we don't know where to start or what to do with it. This year our major project was getting new carpet in the house, so we'd decided that next year, we'd just call in a professional to spruce it up. I hated the bushes. I didn't enjoy sitting out with the girls while they were playing because I didn't like looking at all my shortcomings. What a wonderful gift. Janet (my pastor's wife) knew all this from a conversation we had once when she dropped off her little girl to play, and boy, did she take it and run with it! She had originally planned to just bring Pastor over to work on it together, but in the end the ideas kept coming and more and more people got involved. One new guy from church enjoys community projects and wanted to be involved--and he was a God-send. His job in college was to put together swingsets, etc, when people bought them from the store he worked in. Rather than taking him all day, like the reviews for the swingset suggested it might take (though the end result was worth it, according to consumers), it took him an hour and a half by himself.
What a witness to the community, too. We've struggled with building relationships with our neighbors. We've taken cookies, tried to be as friendly as possible, but people have their own lives that were established before we moved in, and it's been hard to build any bridges. Alot of the neighbors stood out and watched the action. The neighbor across the street kept remarking about the pastor mowing the yard--"You're sure he's the pastor? A pastor mowing someone's yard???" He ended up having another guy from our church work on his carburator, and in the end, he was invited to church. None of these neighbors knew that there were problems with our precious baby, so I'm interested to see if they show any interest again when we get home.
Other people have taken so much time out to take care of our kids--we've gotten so many offers! Our SS class is bringing meals when we come home from the hospital. Lisa Bryant brought a video camera, and the class pitched in with money towards that! (I'm telling you what, we're spoiled rotten!) And though this landscaping project doesn't seem like it's connected to Maddy's birth, it is...probably more than they even knew. We've been trying to slowly get our house ready for resale. We've outgrown it, especially now that wheelchairs will be an issue. We are hoping to find something more suitable starting in a couple years from now. Landscaping was one thing that we knew would make a difference, and was on our list. Isn't that amazing, that they pinpointed something that, though it may seem like something that's not an absolute necessity (more of a fun gift), it's somthing that will help us on our journey with Maddy.
Special thanks to the choir for passing the hat for money, to Janet Leeder for brainstorming and getting other people invovled. And to all the landscaping heroes: Mark Miller (professional landscaper), Jed and Alyssa, Pat and Jim Hiatt, Danny Bryant, Jeff Reed, Andy Carpenter, Joyce Ayers, David Blachly, Pastor Leeder, Tori and Barry Brantly, James (?) and Kevin Cox. Wow...thanks so much for your time and expertise, your sweat and hard work! We love you and we feel so loved and cared for.
Tuesday, July 22, 2008
Another step closer home.
Hi, everyone...Just a quick update. I walked in this morning and Kelly (RN) told me that a) Maddy has been approved to a) lay on her shunt side, b) lay on her back once they get a doughnut from ortho, and c) breastfeed! So this might be a crazy exciting day. Pray that everything goes well!
Sorry that I don't have more pics to post. The guest server here at the hospital is down, so I'm on a hospital computer, and I can't upload pics from it.
Pam
Sorry that I don't have more pics to post. The guest server here at the hospital is down, so I'm on a hospital computer, and I can't upload pics from it.
Pam
Monday, July 21, 2008
A series of good days!
On Saturday, I typed an exciting update to send to the email list and to post here, but it evidently didn't take on here. Sorry to leave you with a depressed sounding Mommy. Here's what I wrote Saturday, and then below that will be today's update. Sorry, I haven't had the computer to do updates or pics. I'm on the hospital computer now, and I had 42 emails about Maddy! I love it!
I have the computer just for a few minutes while Glen is in visiting Maddy. I've not been on the since last night, and haven't had a chance to read the many emails and comments in my box yet, but thank you, thank you! I know that your prayers have not gone unheard.
Maddy had an awesome day today! She was extubated very uneventfully. Her lungs sound beautiful, according to the RT. She also was able to tolerate her first bottle feeding (with my milk) since her surgery (actually, she hasn't been fed since Monday, but she's had fluids/nutrients/fat via IV). And I just went back in after shift change and Nurse Jackie has a crib pulled over for her to transfer to at some point tonight. So all in all, a very perfect day!
This is Glen now, suddenly taking over....I was just informed by Nurse Jackie that Maddy is ready for her bottle!! I knew Pam wanted to give it to her, so I came out and let Pam go in to do that for the very first time. Exciting!
Maddy was out of her incubator-type bed and in a real hospital crib for the first time, as well....and also, Jackie says we should be able to begin to hold our precious little girl in another day or so! Can you tell we're thrilled? We feel like we are really beginning to see progress.
Sunday was a wonderfully exciting day for me. I was here all day long and got to hold Maddy for every feeding! I also helped with little things like temps and caths (Ok, cathing isn't so "little" at this stage, but all I did was hold her legs!). Even though that's not much, it still feels good to be a part of the process. Glen is here today and we are holding her lots. I wouldn't be surprised if she comes home later this week. Her feedings are going up, her lipids are shut off as right now, and her TPNs are coming down really quickly. So she'll be on all breastmilk soon! Neurosurgery says that as far as they're concerned she's ok to go home. Of course, we still have to finish getting off the TPNs and learn how to change her cath, etc, but we're down to days now, rather than weeks, if things continue to progress this way. One concern is that she keeps de-SATing (oxygen levels dropping) when she drinks her bottle. They have her on a little oxygen for that, but nothing major. They're weaning her off already (got it yesterday). Other than that, we're good!
Ok, "have to" go feed Maddy!
Love you all, and thanks for praying!
Pam
I have the computer just for a few minutes while Glen is in visiting Maddy. I've not been on the since last night, and haven't had a chance to read the many emails and comments in my box yet, but thank you, thank you! I know that your prayers have not gone unheard.
Maddy had an awesome day today! She was extubated very uneventfully. Her lungs sound beautiful, according to the RT. She also was able to tolerate her first bottle feeding (with my milk) since her surgery (actually, she hasn't been fed since Monday, but she's had fluids/nutrients/fat via IV). And I just went back in after shift change and Nurse Jackie has a crib pulled over for her to transfer to at some point tonight. So all in all, a very perfect day!
This is Glen now, suddenly taking over....I was just informed by Nurse Jackie that Maddy is ready for her bottle!! I knew Pam wanted to give it to her, so I came out and let Pam go in to do that for the very first time. Exciting!
Maddy was out of her incubator-type bed and in a real hospital crib for the first time, as well....and also, Jackie says we should be able to begin to hold our precious little girl in another day or so! Can you tell we're thrilled? We feel like we are really beginning to see progress.
Sunday was a wonderfully exciting day for me. I was here all day long and got to hold Maddy for every feeding! I also helped with little things like temps and caths (Ok, cathing isn't so "little" at this stage, but all I did was hold her legs!). Even though that's not much, it still feels good to be a part of the process. Glen is here today and we are holding her lots. I wouldn't be surprised if she comes home later this week. Her feedings are going up, her lipids are shut off as right now, and her TPNs are coming down really quickly. So she'll be on all breastmilk soon! Neurosurgery says that as far as they're concerned she's ok to go home. Of course, we still have to finish getting off the TPNs and learn how to change her cath, etc, but we're down to days now, rather than weeks, if things continue to progress this way. One concern is that she keeps de-SATing (oxygen levels dropping) when she drinks her bottle. They have her on a little oxygen for that, but nothing major. They're weaning her off already (got it yesterday). Other than that, we're good!
Ok, "have to" go feed Maddy!
Love you all, and thanks for praying!
Pam
Saturday, July 19, 2008
Saturday, July 19
I have the computer just for a few minutes while Glen is in visiting Maddy. I've not been on the since last night, and haven't had a chance to read the many emails and comments in my box yet, but thank you, thank you! I know that your prayers have not gone unheard.
Maddy had an awesome day today! She was extubated very uneventfully. Her lungs sound beautiful, according to the RT. She also was able to tolerate her first bottle feeding (with my milk) since her surgery (actually, she hasn't been fed since Monday, but she's had fluids/nutrients/fat via IV). And I just went back in after shift change and Nurse Jackie has a crib pulled over for her to transfer to at some point tonight. So all in all, a very perfect day!
OH MY>>>>Glen now: I was just informed by Nurse Jackie that Maddy is ready for her bottle!! I knew Pam wanted to give it to her, so I came out and let her go in to do that for the very first time. Exciting!
Maddy was out of her incubator-type bed and in a real hospital crib for the first time, as well....and also, Jackie says we should be able to begin to hold our precious little girl in another day or so! Can you tell we're thrilled? We feel like we are really beginning to see progress.
Maddy had an awesome day today! She was extubated very uneventfully. Her lungs sound beautiful, according to the RT. She also was able to tolerate her first bottle feeding (with my milk) since her surgery (actually, she hasn't been fed since Monday, but she's had fluids/nutrients/fat via IV). And I just went back in after shift change and Nurse Jackie has a crib pulled over for her to transfer to at some point tonight. So all in all, a very perfect day!
OH MY>>>>Glen now: I was just informed by Nurse Jackie that Maddy is ready for her bottle!! I knew Pam wanted to give it to her, so I came out and let her go in to do that for the very first time. Exciting!
Maddy was out of her incubator-type bed and in a real hospital crib for the first time, as well....and also, Jackie says we should be able to begin to hold our precious little girl in another day or so! Can you tell we're thrilled? We feel like we are really beginning to see progress.
Friday, July 18, 2008
Friday Update, part 2
I hope that you all don't think I'm being a drama queen, but it helps me to write this down. And Daddy says everyone wants to know, no one wants to ask.
I just called NICU for an update, and they are giving Maddy some blood right now. They said that it's very common with such an extensive surgery that the body is working so hard to heal that it uses a lot of red blood cells. The hard part in seeing her will be that they are having to put it through an IV in her scalp. Lovely.
PLEASE pray for a very boring day tomorrow. I'm trying to decide whether to go down tonight.
I just called NICU for an update, and they are giving Maddy some blood right now. They said that it's very common with such an extensive surgery that the body is working so hard to heal that it uses a lot of red blood cells. The hard part in seeing her will be that they are having to put it through an IV in her scalp. Lovely.
PLEASE pray for a very boring day tomorrow. I'm trying to decide whether to go down tonight.
Friday Update
Copy of mass email, in case you missed it.
Once again, thanks to everyone who has called, visited or written. Nothing like being spoiled! :)
Yesterday was a blissfully uneventful day with Maddy resting, recovering from surgery and being weaned off the vent. This morning Glen's parents visited and we were so pleased to find that they had extubated her and she was breathing well on her own. I got sent out for a while so that they could put in a catheter and NG tube, and they said it wasn't fun to watch. So I went back out to wait for Pastor Liz (our choir director, worship pastor), who was coming to sit with me for a while. I was out there for about an hour, and then when I took Liz back in, I realized something was wrong--they had pulled a divider close to her "pod," the neonatologist on the floor for the day was right by her, and as we got closer, the nurse said, "There's the mother," and the doctor turned and looked pretty concerned. Anyway, my heart just about stopped. Evidently, right after they put her cath in and were turning her a bit to put in the ng tube, her heart rate dropped, her oxygen levels dropped and she stopped breathing. They tried to bag breathe for her, and that didn't work, so they had to put the vent back in very quickly. After they did (I think it was after, anyway), they pulled a huge amount of mucus out of her airways. They think that when they turned her, it knocked it loose and she wasn't able to breathe around it. She now has a heart murmur, too, that she didn't have at birth. They think that the flap will close off again, as it does at birth, but they have to keep an eye on it. I'm learning very quickly to roll with the punches! It's a day-by-day experience, for sure. I don't have the energy to flip out every time they tell me something else. I was so thankful that A), I wasn't in the room to witness the rush to help her, and B), that Pastor Liz was there when I found out. She's so calm and reassuring and I'm sure it helped me to regain my equilibrium a bit! Thanks, Liz! It meant so much for me to have you there.
I absolutely love the nurses that work with her for 12 hours on end. She has her own nurse and they are almost constantly working with her. That may annoy some people, but it makes me feel very reassured that Maddy is getting the attention and care she needs.
Thanks for hearing me out. All the medical details are probably a drag, but it's cathartic to report and then put it behind me! :)
Oh, so more thanks: Jed and Alyssa--um, the orange peel chicken from PF Changs was heavenly, divine, glorious, too-good-to-be-true after hospital food! And to Stan and Konny for a Frosty and french fries!!!!! And Pastor Liz for a yummy sandwich (after nothing to eat yet today) and the best steak fries known to man!
Keep praying for us!
Pam
Once again, thanks to everyone who has called, visited or written. Nothing like being spoiled! :)
Yesterday was a blissfully uneventful day with Maddy resting, recovering from surgery and being weaned off the vent. This morning Glen's parents visited and we were so pleased to find that they had extubated her and she was breathing well on her own. I got sent out for a while so that they could put in a catheter and NG tube, and they said it wasn't fun to watch. So I went back out to wait for Pastor Liz (our choir director, worship pastor), who was coming to sit with me for a while. I was out there for about an hour, and then when I took Liz back in, I realized something was wrong--they had pulled a divider close to her "pod," the neonatologist on the floor for the day was right by her, and as we got closer, the nurse said, "There's the mother," and the doctor turned and looked pretty concerned. Anyway, my heart just about stopped. Evidently, right after they put her cath in and were turning her a bit to put in the ng tube, her heart rate dropped, her oxygen levels dropped and she stopped breathing. They tried to bag breathe for her, and that didn't work, so they had to put the vent back in very quickly. After they did (I think it was after, anyway), they pulled a huge amount of mucus out of her airways. They think that when they turned her, it knocked it loose and she wasn't able to breathe around it. She now has a heart murmur, too, that she didn't have at birth. They think that the flap will close off again, as it does at birth, but they have to keep an eye on it. I'm learning very quickly to roll with the punches! It's a day-by-day experience, for sure. I don't have the energy to flip out every time they tell me something else. I was so thankful that A), I wasn't in the room to witness the rush to help her, and B), that Pastor Liz was there when I found out. She's so calm and reassuring and I'm sure it helped me to regain my equilibrium a bit! Thanks, Liz! It meant so much for me to have you there.
I absolutely love the nurses that work with her for 12 hours on end. She has her own nurse and they are almost constantly working with her. That may annoy some people, but it makes me feel very reassured that Maddy is getting the attention and care she needs.
Thanks for hearing me out. All the medical details are probably a drag, but it's cathartic to report and then put it behind me! :)
Oh, so more thanks: Jed and Alyssa--um, the orange peel chicken from PF Changs was heavenly, divine, glorious, too-good-to-be-true after hospital food! And to Stan and Konny for a Frosty and french fries!!!!! And Pastor Liz for a yummy sandwich (after nothing to eat yet today) and the best steak fries known to man!
Keep praying for us!
Pam
Wednesday, July 16, 2008
Sibling visit and surgery
In case you hadn't gotten the group email Glen sent, Madeline is out of surgery and doing well. They were able to close up her back without extra incisions and only one skin graft. Her shunt was placed at the same time. She's on a vent for today and maybe tomorrow since she's on quite a bit of medicine to keep her sedated and in no pain. We are so relieved to be through that part of the journey. It was the hardest thing I've ever done to send her off to surgery. She's so tiny and I just couldn't (and didn't want to!) imagine her little body prepped and draped for surgery and then everything else surgery means. Thank you so much for your prayers--I'm confident that's the only thing that helped us through that rough half hour while we were waiting to send her off.
Some pictures: Below--Nurse Kelly helping the girls scrub to visit Maddy yesterday.
Livy loved her gown.
Carli could hardly wait to see the baby. Grandma said she talked of little else all day.
First glimpse of baby sister Madeline! They both were so good and didn't touch anything they shouldn't.
Livy pulled Maddy's hat off. The look on Carli's face during the whole visit was priceless.
Middle child now! Aunt Pam will probably take Olivia under her wing for counseling! :)
Maddy has quite a grip on Carli's finger.
This morning before surgery.
After surgery. She's laying on her tummy, diaper on backwards (!). They had to get inventive with her positioning because of her clubbed feet. She looks pretty comfortable to me!
This is Kelly, Maddy's nurse for the last three days. Today, Maddy is her only "kid" since its a big day for her and she needs lots of extra attention. She's been so incredible...I'll miss her on her days off.
Some pictures: Below--Nurse Kelly helping the girls scrub to visit Maddy yesterday.
Livy loved her gown.
Carli could hardly wait to see the baby. Grandma said she talked of little else all day.
First glimpse of baby sister Madeline! They both were so good and didn't touch anything they shouldn't. 
Livy pulled Maddy's hat off. The look on Carli's face during the whole visit was priceless.
Middle child now! Aunt Pam will probably take Olivia under her wing for counseling! :)
Maddy has quite a grip on Carli's finger.
Warning: Pictures below show Maddy's back before surgery.
Maddy's myelomeningocele. Her spine comes through her back into a little sac. Alot of nerves weren't covered by her sac. They kept the area covered in a wet dressing to keep it from drying out, and then covered in saran wrap (for lack of a better description) to keep it tight and sterile.
This morning before surgery.
After surgery. She's laying on her tummy, diaper on backwards (!). They had to get inventive with her positioning because of her clubbed feet. She looks pretty comfortable to me!
This is Kelly, Maddy's nurse for the last three days. Today, Maddy is her only "kid" since its a big day for her and she needs lots of extra attention. She's been so incredible...I'll miss her on her days off. 
Tuesday, July 15, 2008
Prayer Request for Maddy
Hi, everyone. Thanks so much for all your encouraging notes and phone calls. We've been enjoying them!
Maddy has had a good day--sleeping lots, of course. They had to stop feeding her today, since she started vomiting last night. She did so well taking the bottle (can't nurse til after surgery), but maybe she got too much too soon. They did a KUB scan just to make sure that nothing was wrong with her stomach and abdomen, but everything came back just fine. She's off any feeding until tomorrow after her surgery.
We do have one possible complication that sounds a little scary. Maddy had an MRI this morning, and the neonatologist on duty today said that they are concerned about septic optic dysplasia. They won't know until they check the optic nerve, sometime after surgery, but it could be serious where her vision is concerned. We're trying to keep our minds off the possibilities for now since we won't know anything for a bit, but we would appreciate your prayers for peace while we wait and that it would turn out to be nothing to be concerned about. She has lab work tomorrow, too, to test for chromosomal issues--perfectly routine, but obviously we want those to come back with good results. We won't know anything on that for a month or so.
Carli and Olivia got to see Madeline today. I can't explain to you how fun it was to see the look of wonder in Carli's eyes, especially. She can see her every day if we want, but Olivia only had that one chance. A little risky to let a 2 1/2 year old in NICU, but it's nice they let her do it once. We took pictures that we hope to have uploaded soon.
We've spent a lot more time with Maddy today. Actually, I just saw her once yesterday, when they were wheeling me up from OR. By night time, I missed her so badly. But they got me out of bed this morning, and I've stolen about every minute possible to be with her. I'm still fighting extreme drowsiness, so sometimes I'm about asleep by her, especially when the heat lamp is on her! But I could sit and just stare at her all day. She's so beautiful.
Thanks so much for your prayers and support. Please continue to send them up tomorrow--she's in surgery at 8. Pray that the surgeon's hands will be guided by God's, and that she will tolerate the anesthesia and surgery well.
Pam
Maddy has had a good day--sleeping lots, of course. They had to stop feeding her today, since she started vomiting last night. She did so well taking the bottle (can't nurse til after surgery), but maybe she got too much too soon. They did a KUB scan just to make sure that nothing was wrong with her stomach and abdomen, but everything came back just fine. She's off any feeding until tomorrow after her surgery.
We do have one possible complication that sounds a little scary. Maddy had an MRI this morning, and the neonatologist on duty today said that they are concerned about septic optic dysplasia. They won't know until they check the optic nerve, sometime after surgery, but it could be serious where her vision is concerned. We're trying to keep our minds off the possibilities for now since we won't know anything for a bit, but we would appreciate your prayers for peace while we wait and that it would turn out to be nothing to be concerned about. She has lab work tomorrow, too, to test for chromosomal issues--perfectly routine, but obviously we want those to come back with good results. We won't know anything on that for a month or so.
Carli and Olivia got to see Madeline today. I can't explain to you how fun it was to see the look of wonder in Carli's eyes, especially. She can see her every day if we want, but Olivia only had that one chance. A little risky to let a 2 1/2 year old in NICU, but it's nice they let her do it once. We took pictures that we hope to have uploaded soon.
We've spent a lot more time with Maddy today. Actually, I just saw her once yesterday, when they were wheeling me up from OR. By night time, I missed her so badly. But they got me out of bed this morning, and I've stolen about every minute possible to be with her. I'm still fighting extreme drowsiness, so sometimes I'm about asleep by her, especially when the heat lamp is on her! But I could sit and just stare at her all day. She's so beautiful.
Thanks so much for your prayers and support. Please continue to send them up tomorrow--she's in surgery at 8. Pray that the surgeon's hands will be guided by God's, and that she will tolerate the anesthesia and surgery well.
Pam
Monday, July 14, 2008
She's here!
Madeline Kate Asbury was born at 8:27 this morning. She weighed 6 pounds and 15 ounces, identical birth weight of our first daughter, Carli Brooke.
I will write more later (the nurse is here!), but here are some initial pictures, starting with yesterday afternoon....
I will write more later (the nurse is here!), but here are some initial pictures, starting with yesterday afternoon....
Friday, July 11, 2008
We're a go for Monday
Had my amniocentesis this morning! For any of you that haven't had the privilege, let me tell you, it's a blast! Ha. I think I dreaded it more than my c-section, but it really wasn't that bad. Very uncomfortable...I mean really. A LONG needle straight into your belly. How much fun is that. But no pain, really, so hey, it could have been worse.
Anyway, got the news about 2:30 this afternoon that Madeline's lung function is up to par, so we are going ahead with a c-section on Monday morning at 8:00. I really don't know what I would have done with myself for another week, so I'm so grateful!
We'll try to keep this site updated, so stay tuned!
Anyway, got the news about 2:30 this afternoon that Madeline's lung function is up to par, so we are going ahead with a c-section on Monday morning at 8:00. I really don't know what I would have done with myself for another week, so I'm so grateful!
We'll try to keep this site updated, so stay tuned!
Wrap/Pouch give away!!
For posting this, I get an extra entry in the give away! What fun. Click below to register if you want.
Win the Essential Babywearing Stash from Along for the Ride (one Beco Butterfly, one Hotsling baby pouch, one BabyHawk Mei Tai, one Zolowear Ring Sling, and one Gypsy Mama Wrap)
Win the Essential Babywearing Stash from Along for the Ride (one Beco Butterfly, one Hotsling baby pouch, one BabyHawk Mei Tai, one Zolowear Ring Sling, and one Gypsy Mama Wrap)
Tuesday, July 8, 2008
Happy 5th Birthday, Carli Brooke!
Yesterday, our little girl turned a big 5! Is it even possible?
Since it's an important birthday, we had originally planned on having a huge birthday bash with all of her friends from school and church, but with my delivery date moved up three weeks, one week after her birthday, I certainly didn't feel like I could pull off a bash. Carli wanted to go back to Chuck E. Cheese anyway, so she didn't know the difference between me planning and executing a party or Chuck E! :) Maybe next year. So we just had a few of her friends and we had fun! I think I like that place just as much as she does! Olivia stays highly entertained, too. What fun.
Oliva enjoying a carousel.
No fear of Chuck E this year.
Ahhhh....
Friends!
I saved one present for this party (I gave her her other ones at Glen's mom's on the 4th). This is what she'd asked for...a Cabbage Patch Boy.
Wish you could see Livy's face a little better. She had residual effects of bug bites on her forehead and eyes. On Sunday her eye was completely swelled closed. Guess she takes after her Granddad!
Carli used money from Grandma Cessna to buy a Polly Pocket. Glen's mom had gotten her one and she was thrilled. Then a friend got her the Princess Belle set, and the outfits work for both Belle and Polly Pocket. This morning she wanted me to take her picture with them this morning.
Only 5 full days left!
Since it's an important birthday, we had originally planned on having a huge birthday bash with all of her friends from school and church, but with my delivery date moved up three weeks, one week after her birthday, I certainly didn't feel like I could pull off a bash. Carli wanted to go back to Chuck E. Cheese anyway, so she didn't know the difference between me planning and executing a party or Chuck E! :) Maybe next year. So we just had a few of her friends and we had fun! I think I like that place just as much as she does! Olivia stays highly entertained, too. What fun.
Below: A little sunny. Ready to party.
Oliva enjoying a carousel.
No fear of Chuck E this year.
Ahhhh....
Friends!
I saved one present for this party (I gave her her other ones at Glen's mom's on the 4th). This is what she'd asked for...a Cabbage Patch Boy.
Wish you could see Livy's face a little better. She had residual effects of bug bites on her forehead and eyes. On Sunday her eye was completely swelled closed. Guess she takes after her Granddad!
Carli used money from Grandma Cessna to buy a Polly Pocket. Glen's mom had gotten her one and she was thrilled. Then a friend got her the Princess Belle set, and the outfits work for both Belle and Polly Pocket. This morning she wanted me to take her picture with them this morning.
Only 5 full days left!
Thursday, July 3, 2008
Daniel Ray Satterfield
Look what I have!!! Pictures of my very own nephew! It's still a bit surreal that we actually have a boy in this little corner of my family. Here's what Jordan had in the picture email yesterday:
Family of four
In case you forgot--Daniel Ray Satterfield
Born June 30, 2008 at 4:58 pm
8 lbs 13 oz
20 and 3/4 inches long
And just plain cute
Born June 30, 2008 at 4:58 pm
8 lbs 13 oz
20 and 3/4 inches long
And just plain cute
This is Brianna holding Daniel after Jordan brought her to the hospital after midnight. I think she looks rather pleased to be a big sister. I talked to her today, and she said, "I have a little a new little brother, and he's so cute!"
Family of four
Wednesday, July 2, 2008
Picture post
I only have time to give brief captions for these pics rather than full explanations, but hope you enjoy!
A couple of Sundays ago, during hospitality, right before she spilled hot chocolate all over herself.
Alyssa and Lisa getting ready for my baby shower.
One of the diaper cakes, this one from Julie in my SS class.
Some of the kids at the shower. 
Some of the gifts!
Diaper cake--artfully designed by Aunt Pam, Melanie and Emily. Check out the adorable shoes on top!!!
Bookends from Alyssa, complete with nameplates for each of the girls.
On the way to the musical, last night!
Yes, it was windy!
Can you get any cuter than this???
Or this?
Carli and Victoria Leeder
Up front for the fourth time last weekend. Patriotic musical 2008.
Hi, Daddy!
Moses and Carli
Song: The Perfect 10. I'm going to try to get her to do it again so you can hear the whole thing. It's so cute. I'm not so sure the kids choir director had this much "swinging" in mind. Everybody got a huge kick out of Carli's overly dramatic motions.
Below: We Cat-sat for my in-laws two times over the last month or so. This is Jingle, an absolutely beautiful Siamese cat that absolutely love the kids. If it weren't for litter boxes, I'd keep him. I'm surprised the cat still has a voicebox. Olivia dragged him around by his neck quite a bit. Excuse the lack of clothes on Olivia. We were supposed to be getting dressed, but Jingle was getting more attention than Mommy was!
Carli slept on our floor when she was sick. She had to have both CP dolls with her. Finally starting to play with dolls more, as opposed to, say, rocks and sticks.
A couple of Sundays ago, during hospitality, right before she spilled hot chocolate all over herself.
Alyssa and Lisa getting ready for my baby shower.
One of the diaper cakes, this one from Julie in my SS class.
Some of the kids at the shower. 
Some of the gifts!
Diaper cake--artfully designed by Aunt Pam, Melanie and Emily. Check out the adorable shoes on top!!!
Bookends from Alyssa, complete with nameplates for each of the girls.
On the way to the musical, last night!
Yes, it was windy!
Can you get any cuter than this???
Or this?
Carli and Victoria Leeder
Up front for the fourth time last weekend. Patriotic musical 2008.
Hi, Daddy!
Moses and Carli
Song: The Perfect 10. I'm going to try to get her to do it again so you can hear the whole thing. It's so cute. I'm not so sure the kids choir director had this much "swinging" in mind. Everybody got a huge kick out of Carli's overly dramatic motions.
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