Wow, time really goes by quickly! We're officially in the role of "new parents" - always multiple things to get done at any point in the day. So we apologize for taking so long to get another post up.
Payton is doing very well. We've had a few doctors visits, and her pediatrician and cardiologist are pleased with how she's doing. She's getting chubby thighs and cheeks - filling out like babies are supposed to :). She taking her milk well and her heart rate and oxygen rates have been really stable. So, overall we're very grateful to have her home and doing well.
We've had her home for 2 weeks now and are getting to know who she is :). She's a sweet baby and a good sleeper. She's also getting used to baths and no longer totally hates them - though not totally loving them yet either :).
We go back to Mayo the beginning of August for follow up appointments with everybody. So until then the goal is just to love her and take care of her and watch her grow (which she's doing! So far she's been gaining nearly an ounce a day).
Our digital camera is "broken"; so hopefully we'll get it figured out soon and get more pictures up.
Much love! Heather, Aaron, and Payton :)
Sunday, June 25, 2006
Tuesday, June 13, 2006
From Home
I can't tell you how great it feels to be sitting on our couch, in our home, watching our baby sleep in her bouncy seat, posting this on our computer, all while watching the NBA finals on our TV!
Since being home Payton has done really well. She is a pretty happy baby. She sleeps really well at night and most of the time hardly moves when we plug her in for feeding every third hour. Her heart rate and breathing have been great, they are really only affected when she gets mad. That usually just happens when she has a full diaper, gas, or when she gets a bath.
Thank you for continuing to pray for her and us. Mom and Dad are expectedly achieving a high level sleepiness, but we are starting to get into a routine. We had our first check-up with a pediatrician here in Eau Claire on Monday. It went very well. On Thursday we have an appointment with a pediatric cardiologist that travels here from Mayo ever other week. At this point we expect that to go well.
Here's Payton in her "going home from the hospital" dress. It's a dress that Heather wore as a baby. Awww.
At the Ronald McDonald House.
All packed up and ready to go home to Eau Claire!
Since being home Payton has done really well. She is a pretty happy baby. She sleeps really well at night and most of the time hardly moves when we plug her in for feeding every third hour. Her heart rate and breathing have been great, they are really only affected when she gets mad. That usually just happens when she has a full diaper, gas, or when she gets a bath.
Thank you for continuing to pray for her and us. Mom and Dad are expectedly achieving a high level sleepiness, but we are starting to get into a routine. We had our first check-up with a pediatrician here in Eau Claire on Monday. It went very well. On Thursday we have an appointment with a pediatric cardiologist that travels here from Mayo ever other week. At this point we expect that to go well.
Here's Payton in her "going home from the hospital" dress. It's a dress that Heather wore as a baby. Awww.
At the Ronald McDonald House.
All packed up and ready to go home to Eau Claire!
Friday, June 09, 2006
Surprise!
Well, we got back to the Ronald McDonald House at about 5 pm yesterday (thurs.) - WITH OUR BABY GIRL!!! Payton was discharged yesterday!!! :) Sorry for the delay in letting you know. Aaron tried to post yesterday morning and couldn't get the sight to work. The rest of the day was packed from there.
We made a less-than-24hr. run back to Eau Claire on Tues. night so I could go to my doctor appt. on Wed. morning. Then, that afternoon we worked on getting the house ready to bring her home since we thought that would happen early next week. Well, we got a call saying that we could bring her home the next day! Short notice! We got back to Rochester at about 8pm on Wed. and stayed the night in Payton's room - we have to sleep there so the nurses can watch us feed her, etc. to make sure we'll be okay. Then yesterday was a blur of getting instructions and seeing some of her doctors.
Payton is doing really well, and mom and dad are exhausted! :) It's a lot of work to have a baby when there's no nurse there to do everything for you.:) They sent us home with an IV pump to slowly pump milk to her stomach to feed her. We're still working on getting her stomach "stretched", and they also sent us home with a "pulse-ox" monitor (heart rate and oxygenation) which I'm very grateful for. This way we can tell if she's not getting enough oxygen or dropping her heart rate. So far so good though! We're also still at the Ronald McDonald house. We're potentially going home tomorrow (sat.), but we won't go home until we know for sure that the home health care nurse will be able to come on Mon. to check her. The woman from her surgeon's service didn't want us to leave Rochester until we knew her home health care was all lined up. So, we're waiting to hear the confirmation on that.
We're so grateful to have her out of the hospital. We knew there were no guarantees when all of this started and feel incredibly grateful to have her and to see the ways the Lord has taken care of her. I unhooked her monitors yesterday before we left the hospital and just cried I was so happy that she was able to leave. She's a really sweet baby as we're finally able to see more of her personality. She's sleeping through the night (she doesn't really wake up when we feed her with her G-tube), and she's been more awake today - so glad she doesn't have her days and nights mixed up! She doesn't cry unless she's uncomfortable and seems pretty content most of the time.
Thank you so much for praying for her - it was prayer that got her out of the hospital. This journey with her isn't done, but we're so grateful that, at the moment, she's doing really well. Those of you that have called or emailed, we apologize for not getting back to you - it's been a very full few days. And at this point we're like any other new parents - just trying to figure out what this whole parenting this is about on little sleep! :) We love and miss you and are so excited to come home! Again, THANK YOU for your prayers! We'll get some recent pictures of her up soon.
MUCH LOVE!!! Aaron, Heather, and Payton - all together :)
We made a less-than-24hr. run back to Eau Claire on Tues. night so I could go to my doctor appt. on Wed. morning. Then, that afternoon we worked on getting the house ready to bring her home since we thought that would happen early next week. Well, we got a call saying that we could bring her home the next day! Short notice! We got back to Rochester at about 8pm on Wed. and stayed the night in Payton's room - we have to sleep there so the nurses can watch us feed her, etc. to make sure we'll be okay. Then yesterday was a blur of getting instructions and seeing some of her doctors.
Payton is doing really well, and mom and dad are exhausted! :) It's a lot of work to have a baby when there's no nurse there to do everything for you.:) They sent us home with an IV pump to slowly pump milk to her stomach to feed her. We're still working on getting her stomach "stretched", and they also sent us home with a "pulse-ox" monitor (heart rate and oxygenation) which I'm very grateful for. This way we can tell if she's not getting enough oxygen or dropping her heart rate. So far so good though! We're also still at the Ronald McDonald house. We're potentially going home tomorrow (sat.), but we won't go home until we know for sure that the home health care nurse will be able to come on Mon. to check her. The woman from her surgeon's service didn't want us to leave Rochester until we knew her home health care was all lined up. So, we're waiting to hear the confirmation on that.
We're so grateful to have her out of the hospital. We knew there were no guarantees when all of this started and feel incredibly grateful to have her and to see the ways the Lord has taken care of her. I unhooked her monitors yesterday before we left the hospital and just cried I was so happy that she was able to leave. She's a really sweet baby as we're finally able to see more of her personality. She's sleeping through the night (she doesn't really wake up when we feed her with her G-tube), and she's been more awake today - so glad she doesn't have her days and nights mixed up! She doesn't cry unless she's uncomfortable and seems pretty content most of the time.
Thank you so much for praying for her - it was prayer that got her out of the hospital. This journey with her isn't done, but we're so grateful that, at the moment, she's doing really well. Those of you that have called or emailed, we apologize for not getting back to you - it's been a very full few days. And at this point we're like any other new parents - just trying to figure out what this whole parenting this is about on little sleep! :) We love and miss you and are so excited to come home! Again, THANK YOU for your prayers! We'll get some recent pictures of her up soon.
MUCH LOVE!!! Aaron, Heather, and Payton - all together :)
Monday, June 05, 2006
No MRI today
Well, I was holding Payton this morning when her surgeon came in and said he didn't want to have to go through intubating and sedating Payton again. So, no MRI. We may still end up getting one done; we're not sure. They're waiting, as well, to see if she has any more breathing/breath holding episodes. I'm a little relieved as she was intubated twice last week, and it takes its toll on her. We'll see what the neurologists say as well and if we end up with an MRI soon or not. Right now she's doing great and is now being fed mild through her G-tube which goes directly into her stomach. When she's able to swallow without any liquid going into her lungs, she'll be able to feed orally. That's a wait-and-see - most likely another swallow study x-ray sometime in the future. If she continues to do well, there's a light at the end of the tunnel for us to go home, but we have no idea how soon that is. That's about all for today. We've just been enjoying holding her :).
Sunday, June 04, 2006
Family Day
Payton looks good today, which is great because all of her grandpas and grandmas are here again this weekend. She also met two more great grandparents today on Aaron's side. Then her other uncle came to visit her this weekend as well. So, now she has met 3 out of 4 great grandparents and all of her aunts and uncles!
Tomorrow will be another busy day. They plan to do an MRI tomorrow sometime to try to determine if there is any neurological reasons for her breath holding episodes. They will have to intubate her again for this procedure. So we would greatly appreciate your prayers for her to come off of the ventilator well one more time! Also, you could pray for the doctors who read the MRI to get enough evidence to determine something. The trouble with any of these tests is that they are rarely conclusive. We are praying that they would find conclusive evidence that nothing is wrong, and that these episodes are simply the result of a tired baby.
That's it. Just a little update today. Thank you so much for your prayers and for your encouraging comments. We love reading your comments and we covet your prayers. Have a great week!
Tomorrow will be another busy day. They plan to do an MRI tomorrow sometime to try to determine if there is any neurological reasons for her breath holding episodes. They will have to intubate her again for this procedure. So we would greatly appreciate your prayers for her to come off of the ventilator well one more time! Also, you could pray for the doctors who read the MRI to get enough evidence to determine something. The trouble with any of these tests is that they are rarely conclusive. We are praying that they would find conclusive evidence that nothing is wrong, and that these episodes are simply the result of a tired baby.
That's it. Just a little update today. Thank you so much for your prayers and for your encouraging comments. We love reading your comments and we covet your prayers. Have a great week!
Friday, June 02, 2006
A Couple More Bumps
Hello friends! We wanted to thank you for your continued prayer for Payton and ask you to continue to join us in interceeding for her. Yesterday and today have not gone as well as we would have hoped.
Yesterday during the day she did pretty well. Around 5:30 they decided to try and adjust her PICC line (the long term IV line in her arm) because it was slowly working its way out of her. This upset her quite a bit, and they were unable to fix it. They decided to let it be until the anesthesiologist could take a look at it. At about 6:30, when we were putting her back into bed after holding her for awhile, she got fussy. We're not really sure why. She was holding her breath, which is not unusual when she crys. After a few crys she held it for a long time and turned bluish, her heart rate dropped significantly, and she turned a bluish gray color. Her nurse quickly got her breathing again and her heart rate shot back up, but she remained fairly limp. A few seconds later there were several doctors and nurses in the room. She leveled out after about 2 hours, and this morning she looked great! They really don't know what happened. They are still in the process of doing several tests to try to find out. The best guess right now is that it was just the result of her being tired, fussy, and medicated; kind of a bunch of little things that came together at one moment, but we'll see what the tests produce.
So, like I said, she had a great morning and early afternoon today. Then at about 3 they took her to vascular radiology to try and fix her PICC line because the anesthesiologist couldn't fix it either. They had planned to put in a wire through the current PICC, then pull the PICC out over the wire. Then with the wire in, put in a new PICC over the wire so that they wouldn't have to stick her again, and also she wouldn't need to be fully out for this to happen. After 2 hours of working on her they gave up. The original plan failed, so they intubated her (put her on the ventilator again) so that they could put her to sleep, and tried in her other arm, with no luck. They tried every open spot, both legs and the side of her neck that isn't stitched up, but nothing worked. So she is currently back in her room being extubated. When the doctor who did this procedure came and spoke to us afterward he was at a loss for what to do next. He said that they would have to go at it as a team. So most of her doctors will meet sometime soon to try to figure out what to do next. Payton is in no immediate danger. This mostly just slows the process down.
And that's where we are now. It's frustrating to have something like this happen when things are going so well, and when it seemed like there was really only one more thing to work on (feeding). However, we trust that God is both good and sovereign, and that he loves Payton even more than we do.
You can join us in praying for wisdom for the doctors and nurses as they try to figure out what to do next. You can pray that Payton would continue to grow strong and, once again come off the ventilator well. You can also pray that Heather and I would take time to meet with the Lord, and be salt and light to those around us. As you can imagine we have gotten to know a lot of the staff on our floor fairly well. They are good people!
Yesterday during the day she did pretty well. Around 5:30 they decided to try and adjust her PICC line (the long term IV line in her arm) because it was slowly working its way out of her. This upset her quite a bit, and they were unable to fix it. They decided to let it be until the anesthesiologist could take a look at it. At about 6:30, when we were putting her back into bed after holding her for awhile, she got fussy. We're not really sure why. She was holding her breath, which is not unusual when she crys. After a few crys she held it for a long time and turned bluish, her heart rate dropped significantly, and she turned a bluish gray color. Her nurse quickly got her breathing again and her heart rate shot back up, but she remained fairly limp. A few seconds later there were several doctors and nurses in the room. She leveled out after about 2 hours, and this morning she looked great! They really don't know what happened. They are still in the process of doing several tests to try to find out. The best guess right now is that it was just the result of her being tired, fussy, and medicated; kind of a bunch of little things that came together at one moment, but we'll see what the tests produce.
So, like I said, she had a great morning and early afternoon today. Then at about 3 they took her to vascular radiology to try and fix her PICC line because the anesthesiologist couldn't fix it either. They had planned to put in a wire through the current PICC, then pull the PICC out over the wire. Then with the wire in, put in a new PICC over the wire so that they wouldn't have to stick her again, and also she wouldn't need to be fully out for this to happen. After 2 hours of working on her they gave up. The original plan failed, so they intubated her (put her on the ventilator again) so that they could put her to sleep, and tried in her other arm, with no luck. They tried every open spot, both legs and the side of her neck that isn't stitched up, but nothing worked. So she is currently back in her room being extubated. When the doctor who did this procedure came and spoke to us afterward he was at a loss for what to do next. He said that they would have to go at it as a team. So most of her doctors will meet sometime soon to try to figure out what to do next. Payton is in no immediate danger. This mostly just slows the process down.
And that's where we are now. It's frustrating to have something like this happen when things are going so well, and when it seemed like there was really only one more thing to work on (feeding). However, we trust that God is both good and sovereign, and that he loves Payton even more than we do.
You can join us in praying for wisdom for the doctors and nurses as they try to figure out what to do next. You can pray that Payton would continue to grow strong and, once again come off the ventilator well. You can also pray that Heather and I would take time to meet with the Lord, and be salt and light to those around us. As you can imagine we have gotten to know a lot of the staff on our floor fairly well. They are good people!
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