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
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