Today has been slow. Praise the Lord. Not too much to report except that Payton is still doing well. She has been asleep most of the day (we, also, both got naps today:)). She was weaned off of both of her heart medications today, one this morning and the other this evening. They are also giving her more breast milk via the feeding tube and giving her less of her other IV nurishment. Hopefully she will continue to do that until she is eating only breast milk and none of the other nurishment. They took her temporary pace maker leads out today as well. She really only has the ventilator/feeding tube, a couple IVs, and some stiches and bandages right now. She's looking good. After surgeries the body retains lots of fluids that it moves from in and around the organs to the body tissue and then, eventually, out of the body. It can take a long time for the body to give up these fluids, but Payton's have gone down significantly in the last couple days. She is looking more and more like herself. It's great!
We're continuing to pray that she would be ready to come off the ventilator by Wednesday, and that there would be no trouble with that process. Also, we are still praying for her neck to heal well. Please join us!
Calvary Family: We hope that you had a great time worshiping the Lord as a body of believers this morning! We missed you. Thank you so much for your love and prayers. We love you all.
Sunday, May 07, 2006
Saturday, May 06, 2006
If God Could Be Overwhelmed...
If our wonderful Lord and Savior could be overwhelmed, I believe he would be by the amount of intercession that has come before his glorious thrown on behalf of an eleven day old little girl with a sick heart named Payton.
Well, we can be overwhelmed, and we are. Thank you for taking the time to ask God to be with, protect, and heal our little girl. He is so good.
Things are still going well since her chest was closed on Thursday. They are continuing to wean her off of her meds. She got at least three tubes that were in her to help remove fluids from her body removed recently, two that went into her chest on each side and one that went into her abdomen area. She looks a lot less puffy today, and they have even been giving her some of mom's milk via a feeding tube that is currently down her throat with the ventilator tube. Her eyes were glassy and wandering, but today they are clearer and able to focus better. The doctor said today that their goal is to have her off most of her meds by Wednesday. If that happens they will be able to take out the ventilator, which means we will get to hold her soon after that!
We would love to have you join us in praying that Payton would continue to do well as they wean her off her meds. Her blood sugars have been a little up and down lately (she had a 24 earlier today, which is really really low, and she has been as high as 280 since her chest was closed). Pray that her sugars would level out at an appropriate spot and stay there. Continue to pray for that her neck, that the Lord would heal it perfectly and that she would not have a scar there or need a skin graph. Pray that she would be ready to come off the ventilator by Wednesday or before, we are really excited to hold her again! Finally, it would be great if you could join me in praying for Heather. She is recovering, but slowly.
UM Staff family - We hope you are having a great time at May Daze! We love you and wish that we could be there with you.
Also, sorry that the second site I posted earlier didn't work. Here is the corrected site address:
http://www.med.umich.edu/cvc/mchc/parint.htm
Then just follow the instructions from the May 2nd post entitled "Long Day".
Well, we can be overwhelmed, and we are. Thank you for taking the time to ask God to be with, protect, and heal our little girl. He is so good.
Things are still going well since her chest was closed on Thursday. They are continuing to wean her off of her meds. She got at least three tubes that were in her to help remove fluids from her body removed recently, two that went into her chest on each side and one that went into her abdomen area. She looks a lot less puffy today, and they have even been giving her some of mom's milk via a feeding tube that is currently down her throat with the ventilator tube. Her eyes were glassy and wandering, but today they are clearer and able to focus better. The doctor said today that their goal is to have her off most of her meds by Wednesday. If that happens they will be able to take out the ventilator, which means we will get to hold her soon after that!
We would love to have you join us in praying that Payton would continue to do well as they wean her off her meds. Her blood sugars have been a little up and down lately (she had a 24 earlier today, which is really really low, and she has been as high as 280 since her chest was closed). Pray that her sugars would level out at an appropriate spot and stay there. Continue to pray for that her neck, that the Lord would heal it perfectly and that she would not have a scar there or need a skin graph. Pray that she would be ready to come off the ventilator by Wednesday or before, we are really excited to hold her again! Finally, it would be great if you could join me in praying for Heather. She is recovering, but slowly.
UM Staff family - We hope you are having a great time at May Daze! We love you and wish that we could be there with you.
Also, sorry that the second site I posted earlier didn't work. Here is the corrected site address:
http://www.med.umich.edu/cvc/mchc/parint.htm
Then just follow the instructions from the May 2nd post entitled "Long Day".
Friday, May 05, 2006
Boring Day :)
We like boring days :). After all the stress and anxiety from yesterday, Aaron, Payton, and I are very tired today. She's slept a lot today which is good. Overall she continues to make small improvements. They are still weaning her off some of her meds/lowering dosages and allowing her to be a little more awake today. They are also working on slowly weaning her off her ventilator. They also started giving her some milk through her feeding tube to get her stomach moving a bit. So at this point we're in the middle of this marathon and just praying that she continues to make slow steady progress - the less bumps in the road the better, but there probably will be more. She is still critical but making small steps forward, and we're tremendously grateful for that. That's about it for now.
Much love from the Jones family :).
Much love from the Jones family :).
Thursday, May 04, 2006
All Closed Up
They took Payton down at about 8 this morning and closed up her little chest. Praise the Lord everything went well. It was scary to send her down to the OR again, and we were so grateful to get her back with a good report. We had another little bump in the road post surgery, however, and that gave us a little scare. When they close her chest it changes the pressure inside her chest cavity - closer space. It makes it harder for the heart muscle to pump blood to the lungs. So this changed her heart rhythm - this doesn't make the doctors happy. They increased some of her meds and put her on the pacemaker for a little bit to stabalize her. This didn't last too long, and she's pretty stable again. Her body is getting adequate oxygen, and she is no longer on the pacemaker - her blood pressure is good on her own. It's a moment by moment "wait and pray". We're grateful she's stable at the moment and keep praying for the Lord to continue to keep her. Also, if you could pray for her neck. The IV that was moved left a 3rd degree burn where the medication hurt her tissue. Plastic surgery was up this morning and will continue to monitor her neck, but we're praying that it won't leave a large scar and no surgery would be necessary down the road.
I finally was able to read the posts that many of you have left. Thank you so much. I keep saying this, but Aaron and I are truly grateful for all the prayers and encouragement and support we've received. It means so much to us. We'll continue to keep you all posted. Much love from our little Jones family :).
I finally was able to read the posts that many of you have left. Thank you so much. I keep saying this, but Aaron and I are truly grateful for all the prayers and encouragement and support we've received. It means so much to us. We'll continue to keep you all posted. Much love from our little Jones family :).
Wednesday, May 03, 2006
Closing Her Chest
This is Londa again giving an update for Heather and Aaron. It's been another pretty good day here with sweet Payton. They were concerned yesterday about her urine output, but that seems to be cleared up and things seem to be all ready for them to finally close her chest tomorrow. They will be sending her to surgery around 7:30am so please be praying that it would go well and that her body would respond well to the closure throughout the day.
Pray as well for the spot on her neck. It's pretty raw and painful. Pray that it would heal quickly and without a scar.
I had the chance to see her today and she's so sweet. She would open her eyes and try really hard to focus on mom and dad. She did pretty good at it for a while which was fun. It's great to be able to touch her fingers and just tell her how sweet she is.
Pray as well for the spot on her neck. It's pretty raw and painful. Pray that it would heal quickly and without a scar.
I had the chance to see her today and she's so sweet. She would open her eyes and try really hard to focus on mom and dad. She did pretty good at it for a while which was fun. It's great to be able to touch her fingers and just tell her how sweet she is.
Tuesday, May 02, 2006
Long Day
They were planning to close her sternum this morning, but she had a few bumps last night. She had a little air in her chest between her chest and lungs which affects her lung capacity. So they decided not to close her today but to potentially do a partial closure (not close it all the way but move the opening a little closer together). Then the IV in her neck was spilling back onto her neck a little, and the medication is hard on her skin and tissue. This morning the anesthesiologist came and removed that IV and moved it near her groin area so the spot on her neck can heal. It's a pretty nasty spot. Then they also did an ultrasound on her head and kidneys. Her kidney function was doing good but has declined a little and she's not putting out much urine.
This afternoon her doctor decided to still do the partial closure, and they just finished. As far as we can tell that went well. They are going to see how she does and are hoping to do the complete closure on Thursday.
She had her eyes open a little bit today but can't really focus on anything. We just keep holding her hands and feet and touching her face/head to let her know we're there. She got the hiccups a lot in the womb and is still getting them at times. They just shake her little body with all the tubes and IV's and it's hard to watch cause she just looks uncomfortable.
So overall, this has been a longer day. We like boring much better. Please keep praying for her - specifically for no more "bumps in the road" and for no infection.
Again, thank you so much for your prayers. It continues to be an encouragement to me to know how many people are praying for her. We're so grateful. We'll continue to update as we know more.
Also, Aaron wanted to include a couple links that give some information about the heart defects that Payton had repaired for those of you who are curious.
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/iaa.htm.
-click on "graphic summary" above the picture of the heart
-this does a great job of showing you what they did to repair one of Payton's defects, the interrupted aortic arch
http://www.ned.umich.edu/cvc/mchc/parint.htm
These two sites talk about interrupted aortic arch (her aorta ran to her head, but didn't connect to the other half of the aorta that runs to the rest of her body)and ventricular septal defect (a hole between her right and left ventricles). Payton had both of these as well as a atrial septal defect (a hole between her right and left atriums) and coarctation of the aorta (a narrowing of the aorta).
You can see pictures of all of these on the second site if you click on the links of the names of these defects.
On the second site, the first page shows a picture of the interrupted aortic arch (the number "4" shows the patent ductus arteriosus, this is the duct that blood flows through until birth or shortly after birth, but then closes within a couple days after birth, Payton's remained wide open after birth, but they also closed this off during the surgery). If you look at the first paragraph you'll see links to four other defects. Click on "aoritc stenosis" (Payton doesn't didn't have this, but it will get you to the other defects she did have). Once you are on the aortic stenosis page you can click on the names of the other defects. They are listed in the first paragraph. "Coarctation of the aorta", "ventrical septal defect", and "atrial septal defect".
Hopefully that all makes sense. It's probably way too much detail for most of you, but at least there's pictures! Thanks for interceeding.
This afternoon her doctor decided to still do the partial closure, and they just finished. As far as we can tell that went well. They are going to see how she does and are hoping to do the complete closure on Thursday.
She had her eyes open a little bit today but can't really focus on anything. We just keep holding her hands and feet and touching her face/head to let her know we're there. She got the hiccups a lot in the womb and is still getting them at times. They just shake her little body with all the tubes and IV's and it's hard to watch cause she just looks uncomfortable.
So overall, this has been a longer day. We like boring much better. Please keep praying for her - specifically for no more "bumps in the road" and for no infection.
Again, thank you so much for your prayers. It continues to be an encouragement to me to know how many people are praying for her. We're so grateful. We'll continue to update as we know more.
Also, Aaron wanted to include a couple links that give some information about the heart defects that Payton had repaired for those of you who are curious.
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/iaa.htm.
-click on "graphic summary" above the picture of the heart
-this does a great job of showing you what they did to repair one of Payton's defects, the interrupted aortic arch
http://www.ned.umich.edu/cvc/mchc/parint.htm
These two sites talk about interrupted aortic arch (her aorta ran to her head, but didn't connect to the other half of the aorta that runs to the rest of her body)and ventricular septal defect (a hole between her right and left ventricles). Payton had both of these as well as a atrial septal defect (a hole between her right and left atriums) and coarctation of the aorta (a narrowing of the aorta).
You can see pictures of all of these on the second site if you click on the links of the names of these defects.
On the second site, the first page shows a picture of the interrupted aortic arch (the number "4" shows the patent ductus arteriosus, this is the duct that blood flows through until birth or shortly after birth, but then closes within a couple days after birth, Payton's remained wide open after birth, but they also closed this off during the surgery). If you look at the first paragraph you'll see links to four other defects. Click on "aoritc stenosis" (Payton doesn't didn't have this, but it will get you to the other defects she did have). Once you are on the aortic stenosis page you can click on the names of the other defects. They are listed in the first paragraph. "Coarctation of the aorta", "ventrical septal defect", and "atrial septal defect".
Hopefully that all makes sense. It's probably way too much detail for most of you, but at least there's pictures! Thanks for interceeding.
Monday, May 01, 2006
A Note from Mom
Well, this is my first official post. Our dear friend, Londa, created this blog for us and has done a better job explaining what's happened than I could have. I'll maybe take an opportunity to fill in the details...
Tuesday evening, April 25, I went in to be induced. On Wednesday, the 26th, she was born at 6:41 pm. When she was born she had the cord wrapped around her neck pretty good which prevented her from getting that first good cry out. I was able to hold her for about a minute before they began assessing her and treating her. Because she didn't get that good cry she had "wet lung" and was put on oxygen right away. She was on oxygen all night on Wed., and then late Thursday morning they decided just to do an ecocardiogram (sp?) to make sure everything was okay. The results were sent to Mayo to be read here in the next few days. Well, the tech must've seen something because the results were read that afternoon, and as Aaron and I were eating supper, one of the doctors came and explained a little what was wrong with Payton's heart and that she would be airlifted to Mayo within the next few hours. Needless to say this was a bit of a shock for us. There was a narrow spot in her aorta, but while a baby is in the womb, blood is pumped through a duct which closes when the baby is born and has those good cries when coming out of the womb. Having the cord wrapped around her neck is what saved her life because it prevented the duct from closing.
Payton's helicopter lifted off around 9 pm, and I was discharged early from the hospital at 10. We drove to Rochester that night and got here around 2am. Aaron and my dad went directly to the hospital where they found out they'd be operating the next morning. We got to the hospital at about 8 on Friday morning and at 9 were sending her off to the OR to a very critical surgery. There are no words for the fear and terror of sending your less than 48 hour old baby into major surgery. Along with fixing the aorta, they closed 2 holes in her heart and closed that duct that was still open. We ended up having one of the best surgeons in the country which was a blessing, and overall the surgery went well. Londa posted the arrithmea (sp?) that happened Fri. night and terrified us again for the day - so far the worst day of my life.
Sat. morning they took her back to surgery to close her up (not uncommon to leave babies open after open heart surgery because the pressure from extra fluids, ect. is too much). Sat. night was another scary night because her blood pressure was low and so they opened her again. Her current status is that they will close her tomorrow morning first thing. Probably around 8-9. Please pray for Payton tomorrow. This is another long day of waiting and making sure she does okay after they close her up. Three things to pray for specifically - no infection, no complications, and good response being closed.
Aaron and I are overwhelmed at how many people are praying for us and for Payton. It's humbling to see how many people care and are supporting you (even people we've never met). We're beyond grateful and know that your prayers are what's keeping her going. Please keep praying - we need them desperately. We'll try to keep you posted in the upcoming days and get some pictures up :). We think she's just beautiful :).
Tuesday evening, April 25, I went in to be induced. On Wednesday, the 26th, she was born at 6:41 pm. When she was born she had the cord wrapped around her neck pretty good which prevented her from getting that first good cry out. I was able to hold her for about a minute before they began assessing her and treating her. Because she didn't get that good cry she had "wet lung" and was put on oxygen right away. She was on oxygen all night on Wed., and then late Thursday morning they decided just to do an ecocardiogram (sp?) to make sure everything was okay. The results were sent to Mayo to be read here in the next few days. Well, the tech must've seen something because the results were read that afternoon, and as Aaron and I were eating supper, one of the doctors came and explained a little what was wrong with Payton's heart and that she would be airlifted to Mayo within the next few hours. Needless to say this was a bit of a shock for us. There was a narrow spot in her aorta, but while a baby is in the womb, blood is pumped through a duct which closes when the baby is born and has those good cries when coming out of the womb. Having the cord wrapped around her neck is what saved her life because it prevented the duct from closing.
Payton's helicopter lifted off around 9 pm, and I was discharged early from the hospital at 10. We drove to Rochester that night and got here around 2am. Aaron and my dad went directly to the hospital where they found out they'd be operating the next morning. We got to the hospital at about 8 on Friday morning and at 9 were sending her off to the OR to a very critical surgery. There are no words for the fear and terror of sending your less than 48 hour old baby into major surgery. Along with fixing the aorta, they closed 2 holes in her heart and closed that duct that was still open. We ended up having one of the best surgeons in the country which was a blessing, and overall the surgery went well. Londa posted the arrithmea (sp?) that happened Fri. night and terrified us again for the day - so far the worst day of my life.
Sat. morning they took her back to surgery to close her up (not uncommon to leave babies open after open heart surgery because the pressure from extra fluids, ect. is too much). Sat. night was another scary night because her blood pressure was low and so they opened her again. Her current status is that they will close her tomorrow morning first thing. Probably around 8-9. Please pray for Payton tomorrow. This is another long day of waiting and making sure she does okay after they close her up. Three things to pray for specifically - no infection, no complications, and good response being closed.
Aaron and I are overwhelmed at how many people are praying for us and for Payton. It's humbling to see how many people care and are supporting you (even people we've never met). We're beyond grateful and know that your prayers are what's keeping her going. Please keep praying - we need them desperately. We'll try to keep you posted in the upcoming days and get some pictures up :). We think she's just beautiful :).
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