We need a miracle

We spoke with the surgeon a little bit ago. The echo showed that her ventricles are weakening from what they saw on Wed. The other peds cardiac surgeon who does transplants will evaluate her today to see if she'd even be a candidate - we'll find that out in the morning. The only way she'll live at the moment is on the life support of the heart/lung machine. There really aren't any surgical options. So if she is a candidate for a transplant we need to decide whether we'd want to go that route - which to get a heart is like winning the lottery as our surgeon put it - or if we'll keep her on life support for a prolonged period to see if there's any chance. We've basically lost her at this point as it seems a transplant or a miracle is her only hope. We're praying for the Lord to be close, for Him to bring healing, and for His help in the hours to come. We covet your prayers.
Our family is here with us as well - just so you know we aren't alone.

Long Week

Well I just realized all my posts from Wednesday, I titled as Tuesday. It all blurs together - I guess sometimes you just have to laugh at yourself :). Goodness - we'll I'll try to keep my days straight from now on :).

Friday

Well there wasn't too much to report yesterday. They were trying to let her rest. They ended up putting her on dialysis yesterday evening. She was starting to get pretty puffy by the end of the day. The dialysis started at 8pm, and she looks a lot better today as it's gotten a lot of the fluid off her. The good news is she made the transition onto dialysis very well and responded well to it.
They did an echo on her heart this morning to see how she looked. One of her valves is a little leaky, and they wanted to check on that as it's one of the indicators of her readiness to come off the heart lung machine. The pediatric cardiologist is unsure of her readiness to come off the heart/lung machine today, but they'll let her surgeon look at the echo as well. So at this point we're not sure if she'll go down to the OR this afternoon or not. She may need to rest a bit more before they try to take her off. I'll try to let you know later what we hear.

Tuesday post-OR

We just spoke with the surgeon. He was encouraged and said Payton had made some improvement. He is quick to say we're still not out of the woods, but he's also cautious to say anything positive - so it's a good thing when he does. They did what was planned. She's not ready to be pulled off the heart/lung machine, but they did pull the canula back into the atrium so her heart has to work a little harder. They'll see how she does tomorrow and then if she is ready on Friday to come off the machine. There are a few doctors and specialists here who have spent many hours and long nights watching her, and we've been so grateful for the care she's gotten here. They've just done an amazing job. And as always, we love our nurses. We've gotten to know many of them.
The prayer requests I gave earlier still apply - kidney function, lungs (no fluid build-up), and of course her heart. Again, thank you so much for praying. After I posted this morning about praying for her kidneys, one of her doctors noted some improvement - it's incredible to see God at work.

Tuesday afternoon

Payton just went down to the OR at about 3:15. We'll let you know how it goes.
Just thought I'd let you know since she's going down later than we anticipated.

Tuesday

Well, the plan still remains to take her down to the OR a little later today to move the canula tube from the heart/lung machine back to allow her heart to work a little more on her own. It seems like she's about the same as yesterday. Her face is less swollen, but it's still a delicate balance to get her fluids right. Her urine output has been slow for a little bit now so they're trying to figure that out. Too much fluid and she's swollen and her body runs out of places to "store" it and it goes to her lungs - too little fluid and her blood pressure drops.
She consistently has 2 nurses taking care of her and one more to run the heart/lung machine. Needless to say she's well watched and taken care of.
Specific things to pray for at the moment: good kidney function, her right ventricle to continue to get stronger to be able to pump blood adequately, her lungs not to accumulate too much fluid, and for Aaron and I - we're back in the old "hospital routine" and in some ways it feels like we never went home. We just miss having our baby girl with us. Again, thank you so much for praying - it is such an encouragement to us to know that so many are praying. Prayer got her through the first surgery, and we know that's what'll see her through now.

Monday

Payton made it through the night and was stable - obviously still critical but stable. We talked to her surgeon a little bit ago. He had come up to clean the opening to make sure there wasn't any excess bleeding, and he was encouraged with her heart activity. As far as I can tell it's increased since last night. The current plan is to let her be today and then take her back to the OR tomorrow to adjust a canular on her heart from the heart/lung machine to see if they can work on getting her off of it. She's very pale and very swollen which is to be expected, but it's still hard to see her like that. Please continue praying; as her nurse said last night - it's up to Payton and God now. We'll do our best to keep you updated - assume that no news is good news. Much love, the Joneses

The next few hours

Well, like I said, Payton made it through surgery. We're waiting for her to come up to the unit - probably another hour. We're still not out of the woods. I had written in a previous blog about the thickening at the base of her artery in her heart - it turns out her aortic valve was not so great either. What they ended up doing was opening the hole in between her ventricles (VSD) so that she'll function on one ventricle and mixed blood (oxygenated/nonoxygenated) will be pumped to her body through her pulmonary artery. Her oxygenation will not be as good, and she'll get a little blue if she gets real upset/excited. She'll be on the heart/lung machine as long as she needs for her right ventricle to get stronger to get the blood to her body (at this point her left ventricle is stronger from working to get the blood through her aorta. The nurse said people can be on the heart/lung machine for 2 days or 2 weeks and both are normal. We're praying for a quick recovery, but Payton is always full of "surprises." Also, as far as getting a veinus line in, they ended up putting a port right near her heart which can be there for several days but obviously not for the long haul. That'll be something to pray for that they're able to find a vein at some point. Her chest is also open and will be until the swelling goes down and she's able to tolerate it being closed. So now we just wait, and for the immediate future take it hour by hour.

Surgery is over

At about 6:45 they came and told us they were finishing up. She's doing okay. They'll keep her on the heart/lung machine overnight so her heart can rest. We're currently waiting to meet with the surgeon to find out what he did. We were able to hold her for a few moments this morning even with the breathing tube. We were grateful for that. At 2:45 we walked with her down to the OR. That's all we know for now. We'll either post later tonight or first thing in the morning. We're grateful that she made it. Obviously these next few day are critical and we'll do our best to keep you in the loop. THANK YOU for your prayers. Like heart surgery #1, this one came unexpectedly as well (we found out at 10 am this morning - though we had an inkling something was coming). So we're pretty fried at the moment - it's been a long day.

Surgery Today

This is Londa giving you an update from Aaron and Heather. Payton is being brought down to surgery very soon. This is earlier than expected and very dangerous. The doctor will be performing one of two possiible procedures, both of which have many risks to her life. I'm assuming the procedure will be decided once they get to the OR. At this point the Dr has been trying to get a Venus line into her for the last hour. Once they get her into surgery it will be 5-6 hours before they are finished. Please pray that they would get a line easier than they are. Pray that God would spare Payton's life and heal her heart.

Sunday

Well, Payton was still intubated today. She's also been on a heart med to help regulate her rhythm, and her veinus line has remained in to this point. We're hoping they'll extubate her in the morning. If she keeps doing okay they plan on it. We'll see what happens. Tomorrow the doctors will talk about what comes next. I have no idea what they'll decide, but we'll let you know tomorrow as soon as we can. The earliest they would discharge her would be on Tues., but I'm not sure that'll happen. We'll try to get some pictures up soon as well (if we brought the camera cord... not sure about that). Anyway, we'll talk to you soon.

Still in Rochester...

Well, true to form, Payton likes to keep us on our toes... We were packing up and getting ready to drive back to Eau Claire last night (friday), and Payton started to wimper. So I put her on the bed to check her diaper, and shortly after she went into what seemed to me like a seizure (about 5:45 pm). It scared me to death, and fortunately we were still here. We managed to get ahold of the peds cardiologist on call and told him what had happened, and he wanted us to take her to the ER to be checked. After talking with cardiology they admitted her into the PICU (pediatric intensive care unit). They were checking her over last night when Aaron and I left at about 10. We had been at the house a half hour when they called us to come back because she had gone into an V-Tach (ventricular tachicardia) arhythmia. They managed to get an arterial line in but wanted to get a veinus line in as well to administer the heart meds to help control the arrhythmia. It took a few hours to find a vein, and in the midst of it they sedated her and ended up intubating her so they could keep her still and not loose the line. Aaron and I slept in a sleeping room here on the unit from about 12:15-5:15 and then checked on her again and went back to the house to sleep a few more hours. She's doing better today. She's been keeping her heart at a normal rhythm most of the time. They will keep her here to watch her. The cardiologist said on Mon. they'll talk through more what next steps need to be taken which comes as a result of the echocardiogram she had on Wed.

Her first surgery they widened her aorta at the arch as it comes out of the heart, but at the starting point of the aorta in her heart it's narrow. They couldn't repair it becuase she was so small. Well, the echo showed that that spot had worsened and is potentially more narrow. We met with her cardiologist on Thurs. morning and they wanted to wait as long as possible to address it because the bigger she is the "easier" it is to operate on. They're now not sure if her V-Tach episode last night is related to the narrowing of the artery in her heart, but it seems likely. The original plan was to come back when she's 6 months to do a heart catheter - they go up through her leg artery to look at her heart. This will give them a more accurate picture of what her heart is really doing - more so than the echo will. Then we were to meet with the cardiologist and her surgeon (same one that did the first surgery) to see what needed to be done next. I think now they'll be looking to see if they need to up the date for the heart catheter and go from there. It's scary because this is a very serious surgery, and of the 4 things they were watching on her heart, this was the most serious - "tricky" to fix.

Also, yesterday afternoon we met with genetics. When she was discharged in June they were leaning toward her having something called CHARGE syndrome. I looked it up this summer and agreed that it definitely seemed to fit. So we talked with the doctor for awhile yesterday who confiremed it. CHARGE is a clinical diagnosis, though there is a test for it, but it's only 60-70% accurate. Probably the best place I found that explains what Charge is is chargesyndrome.org, and there's a link "about Charge" that explains it. As she continues to grow and develop we'll continue to learn what applies to her and what doesn't. No child has every single symptom, and Payton doesn't either. Overall, this wasn't a surprise to us; we just wanted to wait for confirmation from the doctor before we made it public knowledge.

Needless to say it's been a long few days. To put it mildly, it's a bummer to see Payton intubated with lines and swollen from fluids. To have her home, we almost "forget" all that needs to be addressed, and this week was a big reminder of the long road we have in front of us. We continue to ask for your prayers, especially as the next few days will probably reveal more regarding the next steps for her heart. We'll keep you posted.
Much love, The Joneses

3 Pounds and 3 Inches

We're here at Mayo. We pulled in Monday afternoon and got right into the Ronald McDonald house which was a blessing. It's a little like being "home" - at least it feels comfortable and familiar. There was a dinner brought in by a church tonight with homemade pies and cakes with homemade ice cream... a definite perk! :).

Well, yesterday was a very full day - we were at the clinic from 8:30 - 5. We learned appt. are a flexible thing here when we finished her first appt. an hour after we were supposed to be at the second. But I have to say, we never waited longer than 15 min. which we were very grateful for. Everything is so organized and efficient. First was a hearing test which was inconclusive but was followed up today. It's hard to tell much yet because she is so young, but she is for sure hearing medium to loud sounds. They'll continue to test as she grows to learn more specifically what she's really getting. Next we went to Ear/Nose/Throat. They are not planning to open up her right nasal passage until she's 2 or 3. It can close back up if they do it when they're real small. Also, they put a scope through her nose and her vocal chord is still paralyzed - so that's still a wait and see as well. I'll be bringing her back at the end of the month for a swallow study - they couldn't get her in this week. Next was plastic surgery. Her neck is healing beautifully, and the doctor was very pleased.
In the afternoon we saw neurology. She was measured and weighed - she's 23 inches (gaing 3 since birth) and about 10 1/2 lb.s (gaining 3 since birth). We first talked to the nurse practitioner and then the doctor so that appt. took awhile. There are a few follow-up tests he wants as well. They're concerned with seizures, but she didn't have any when she was in the hospital, and to our knowledge she hasn't had any. But they still want to make sure she's doing okay. Then we ran around for an hour trying to find the right desk that had called us back with some further instructions about future appt. (ended up being ENT) and then we came back to the house.
We had her first appt. at 8 this morning with gastro regarding her g-tube to see how that was going. We talked with the doctor there and later in the morning met with a nurse who gave us some really helpful info. regarding care and when it needs to be changed, etc. After gastro we had an electrocardiogram where they put little stickers on her and attach what looks like mini jumper cables - it took about a minute or 2 and then they take off everything and she was done. She just layed there and smiled, content as could be. Then she had a chest x-ray which went really quickly as well. After lunch at a Greek restaurant, Aaron brought her back for her echocardiogram and hearning test, and I came back to the house. Aaron said she did great though. Tomorrow morning we see the cardiologist who will put together the tests/x-ray she had today. Then tomorrow afternoon we see a dietician for her feedings, ect. SO FAR we just have the 2 things tomorrow - but as we're learning, they commonly add things on (i.e. the dietician was added today). And on Friday we have 2 appt. with genetics in the afternoon and will then head home.

Payton has done REALLY well for having 2 straight days at the clinic. She's been in her stroller where she can lay out pretty good and will either sleep or kick around if she's awake. We've been thrilled. She's been a little trooper, and we're so proud of her. She continues to charm the nurses - as usual :). It's been fun to see her be more active when she's awake, and she'll smile more. And she's getting a lot better for her baths. I forgot to bring baby wash; so last night I found the mildest soap I could - Ivory dish soap - and gave her a quick bubble bath. She didn't break out into a rash or anything. I don't think I caused any terrible harm to her :).

It definitely does not feel like it's been 2 months since we've been here. It feels like hardly any time has passed at all. We're hoping to head over to the hospital tomorrow to say hello to the nurses on her former wing - hopefully a few that we had consistently will be working. We're excited to see them and show them how she's grown.

Thanks to all of you for praying for us and for her. We continue to need prayer. Being here is a reminder of the long road we have in front of us which can be discouraging at times. Already we have more appt. scheduled, and I'll be coming back for a day the end of Aug., beginning of Sept., and in Nov. One of the most precious things to me, though, are the friends of ours who have kids praying consistently for "Baby Payton". It's such a blessing to me know that kids (who have such great faith - often more than us adults) are praying for her. And I know that has to be a delight and joy to our heavenly Father as well. We'll update again as we learn more this week. Much love! Aaron, Heather, and Baby Payton :)

Mayo Visit

Wow! It's hard to believe that it's August already. Payton has now reached the 10 and a half pound mark. She is doing great and has had lots of quality time with grandpas and grandmas, aunts and uncles, cousins, etc. over the past month. She continues to keep us busy and making sure she gets the attentions she needs.

We are currently preparing to go back to Rochester for Payton's three month check-up with all of her doctors. We are leaving tomorrow (Monday) afternoon and her appointments start bright and early Tuesday morning. We have full days at the clinic on Tuesday and Wednesday, then just a couple appointments on both Thursday and Friday. We plan to come home Friday as of right now.

While we are there, we hope to stay in the Ronald McDonald house again, but it's only available on a first come first serve basis. So we have hotel reservations for now, but we will call the house when we get into town to see if they have an open room.

We'll do our best to keep you posted this week as we know more. Thank you!

Here are a couple pictures for you all, especially you Karen!

Growing!

Well, Payton is doing great! She left the hospital a little over her birthweight on 7 lb. 11 oz. and has been gaining nearly an ounce a day since then and is now 9 lb. 9 oz. Her cardiologist had put her on a formula fortifier (adds calories and some vitamins) to add to her milk, but it can make babies a little groggy. We ran out of it on Mon., and I wanted to see how she did without it. She's been less fussy and more "smiley" since she's been off of it, and her pediatrician is really happy with her weight gain. It's fun to see this change. She'll look more and is awake more and smiles a little more.
At this point we're lined up to go back to Mayo either the first or second week in August so she can have follow up visits with everyone as well as another echocardiogram on her heart and a swallow study to see if she's able to work on feeding. I'm really praying we'll be able to start working on feeding her orally. I know her G-tube is necessary, but it'll be so wonderful to hopefully get rid of it at some point.
Aaron and I continue to make this transition into parenthood and are getting the hang of things as time goes by :). (as seen by the length of time between posts :). We're now initiated into the club - and anyone who's a parent know how busy that membership is! :)
Our camera miraculously started working again so here's some more pictures. She's such a beautiful miracle, and we're really enjoying her.