Ann Arbor Appointment

Well, we had an appointment in Ann Arbor on Thursday, as most of you know. We came away with different news than we expected. According to Autumn’s lab results, her kidneys are not filtering as they should be. The doctors said that according to her current labs she should be on dialysis, but because she is making progress in her growth, she can hold off on it for now. It appears as though she is going to have more of a chronic, or permanent, kidney problem. We are now going to attend the Chronic Kidney Disease Clinic in Ann Arbor once a month, so she can be monitored a little more closely. The doctors said her body will be their guide. They will be taking a couple of extra labs to see how well her bones are actually growing because that is a key indicator of how well she is able to filter her nutrients through her kidneys. They are also keeping a close eye on her blood pressure, as well as her sodium, calcium and potassium levels. We will be talking more about dialysis at our January appointment. There will also be some mention of the possibility of a transplant in the future. Of course, we all know that God has a perfect plan in all of this. We are not worried about the future of our little girl because we have confidence in God’s plan for her in all areas of her life, but especially with her kidneys. He has been in charge since before she was conceived. I love knowing that He doesn’t do anything wrong! All things are for a purpose! What a mighty God we serve! All things work out for His glory, even if it doesn’t seem perfect in our eyes. Please continue to pray for Autumn’s kidneys and overall health. Please also praise God for His faithfulness, His perfect plan and timing, as well as His great love for us all.

A Christmas to Remember

Sorry about the lack in posting, no excuse. Not much has been going on, we have just been enjoying being home together. Autumn is still healing and progressing very well. We have a check up in Ann Arbor tomorrow (December 28, 2006) - we are trusting and praying that everything is still going in the right direction. I will be sure to update you all when we get home.

Jen is enjoying her last few days at home with the girls over Christmas break as she will return to work on January 3, 2007. God has again provided as Grandma Hess has decided to stay home this winter/spring and take care of Autumn. This is a great answer to prayer for us. She is very much looking forward to spending this quality time with her newest grandchild. We are very thankful for her willingness to help us in this way.

Christmas has been such a blessing this year. Just being home together has been a great blessing and a big reason to celebrate, but this year we had a few extra blessings. It has been a tough fall / winter this year in many aspects, including financially, with Jen not working for so long and me being off for months at a time - it has been difficult, but God has provided and the bills have always been paid. Praise the Lord!. With Christmas on the way, we knew that we would be a lot tighter this year than in the past, and we were very OK with that, but God had other plans. First of all - the nurses from the Midland Hospital (pediatric / maternity) decided to bless us and the girls with many gifts this Christmas. We received many necessary household items along with plenty of toys, clothes and books for both of the girls. Jayna got double duty as she was the one that she designated to open all of Autumn's presents. She was one busy girl. We are so thankful to these wonderful ladies and the kindness and compassion that they have shown us this year.

Next, we have had many cards in the mail and drop in visitors this past weekend from family and friends dropping off both gifts and money. We have been overwhelmed by the things that you have done for our family. It has been great to see many of you over the past week or so. You know us well and have travelled through this with us. It has been great to share so much joy with you as well.

Also, a group of students at Coleman High School called STAR decided to help us out. I don't know much about the STAR group or even who is in it. I know that they are involved in different types of community volunteering and work. They planned an activity day on the last day of school for the entire high school. During this time students were able to pay to do different types of activities, like basketball, volleyball, or even throw a pie in the face of a teacher. You can imagine the money that they collected (I know how much that I would've paid to throw a pie at a teacher when I was their age). Even more, imagine our surprise when they called to tell us what they did. We didn't have any idea that this was even going on, and these kids reached out to us. They brought a check over on Friday evening, and we were overcome with emotion. With the house payment looming in the next week, we weren't sure how we were going to pay it and once again, God provided. We are so thankful to the STAR group and look forward to thanking them personally sometime when school resumes.

We have been humbled through this journey. We have learned lots of things including how to accept a gift - it is usually just people being obedient to what God wants them to do, who am I to say no. We have also learned to depend fully, 100%, without reservation on God. He has taken care of us - physically, emotionally, financially and spiritually. He has, without any reservation, taken care of us completely. We love Him and are so thankful for all of you who He has used to bless us this year.

Pictures

Just wanted to share a couple of pictures of the girls since we have been home again. Now that Autumn has all her ports out - she is finally able to have a real bath. Here are just a couple pictures of that and one of 'Sissy Cuddle Time' as Jayna calls it. They just love each other.

Jayna's Christmas Program

Coming Home

Dr. Juarbe said tonight that he sees no reason why Autumn can't come home tomorrow evening. We are so thankful. She is doing wonderful and has received some extraordinary care from some wonderful nurses / doctors. God has placed us in these places, under these circumstances, with these people - in His perfect time. We are so happy that she is well enough to come back home and are looking forward to having all four of us together again. Be looking for some great pictures from home in the next few days!!

Lena Clarke is coming home tomorrow also. It has been such a joy to be down the hall from her these past couple of weeks and it will be great to see her at home again also. Their family is so special to us and we love them so. It is such an encouragement to see them everyday. They have lifted our spirits. God is working in all of our lives - these are two specific examples right now. He has taken so good care of us. Thanks for your prayers for us all!!

Back In Midland

Everything went fairly well today in Ann Arbor. We were transferred late this afternoon back to Midland. They welcomed us back with open arms and Autumn has already seen Dr. Juarbe this evening. As Jen wrote last night, the plan is for Autumn to receive this antibiotic 4 times a day for seven days, which I believe should end on December 12th. Jen will be staying with Autumn in the hospital, so things aren't completely back to normal, but it is so nice to be closer to home. We cannot wait to see Jayna again tomorrow after school and I am sure that she is going to love seeing her little sister again. We are thankful for God's help, timing and strength. He is always perfect - which is why we have endured this. It reminds me of a song - 'His strength is perfect when our strength is gone; He'll carry us when we can't carry on. Raised in His power, the weak become strong; His strength is perfect.'

We are thankful for His perfect strength. If you are in Midland and are feeling well - stop by and visit Jen / Autumn. She would love to see you. Room A409!!

A Day of Tests and Answers

After another 10 hours without food, Autumn had an ultrasound on her liver this morning. This came back normal, which is good to know. The liver doctors told us they believe her elevated levels are due to her infection. They are going to continue to watch her levels to be sure they come down as her infection clears. It was a blessing to hear them say they didn’t think anything else was wrong with her liver.

Autumn needs to stay on Bactrum for 7 days, with yesterday being day 1, to fight off this infection completely. She will have a PICC line put in her head to administer this antibiotic. This is a more permanent IV line. However, it is not as permanent and invasive as the broviac was. Therefore, there is some risk involved with this one, but not as much. She will have to spend another night fasting though. After this is placed, she will be able to hop in an ambulance and take a ride back up to MIDLAND!!! That’s right; she can finish her 7 days of antibiotics in Midland! We are so thankful for this. I will still be staying with her in the hospital, but I will at least be able to see Jayna and any other healthy familiar face that wants to visit. Also, it will be nice to be close to Lena and the Clarke family again. Autumn should finish her antibiotics on the 12th and then be able to go home.

We praise God for His continued goodness and grace to us. We are very thankful that Autumn is line free! We are so glad to be able to come back to Midland. God knows exactly what we need ALL the time. He has been our sustainer and rock. He has heard our weary calls and answered all of them. He is ready and willing to hear yours as well. He is eager for a relationship with you, if you don’t have one already. Then, He will listen to you, answer you, encourage you and bless you. May God bless you all. Thank you for your continued love and encouragement.

Jen

She's Out...

Just got the call from Aaron....she's out of surgery!!!

Everything went great! She will be awake within a half hour and will head back upstairs to continue to heal.

Praise God!!!

She's In...

10:30 am - Autumn is in surgery - they said to expect a few hours at minimum. It takes longer to take them out than it did to put them in.

Surgery

Aaron just called and Autumn is "on deck"...she is next for surgery. They gave her a transfusion this morning to get her blood supply back to where it needed to be for stability, and she has been fasting since 2am - they're so thankful that surgery is this morning since she is so uncomfortable right now with an empty belly.

They plan to remove both the Perinatal port and the Broviac. I'll update as soon as we hear word. Please pray for the doctors and for Autumn to remain strong.

God is faithful. We believe.

-Allison

Round 2 - Day 1

We are finally resettled back in Ann Arbor at the Mott Children's Hospital. We have met with numerous doctors and surgeons since our arrival at about 3:00 pm. Everyone agrees that Autumn's infection is being caused by one of her 'sites' - so they will perform the surgery to remove them. We signed all the paperwork and she will begin fasting at 2:00 am tonight. Unless something changes - she is scheduled for surgery tomorrow. The surgeons did remind us (as always) that if emergencies come up - things may be pushed back - up to a day. Either way, by Wednesday night she should have her ports removed and well on her way to killing this infection. I will try to update you tomorrow on what is going on. Please pray for Autumn tonight as she is going to be very uncomfortable fasting. She likes her food and needs it. She is going to need lots of lovin' tonight and in the morning that is for sure. Thanks for you kind words and prayers. You are appreciated and helpful to us.

Arrived

Aaron just called and they've arrived safely and are getting settled.

On the road again...

The caravan is on it's way to Ann Arbor. Jen is riding in the ambulance and Aaron is following in their vehicle. They finally got on the road about 1:30 after a stall this morning when they couldn't find an open bed for Autumn at Motts. But, after some shuffling around, they were able to locate a place for her.

Aaron & Jen will thankfully stay at the condo again, what a generous family to offer this to Aaron & Jen once again. Truly a blessing. Aaron said the traffic was heading quite slow about 40 mph due to snow.

Please pray for traveling safety and for Autumn's stability while traveling.

Aaron plans to update if they get a chance tonight - hopefully with some detailed info on their game plan for aggressively treating this staph infection.

-Allison

Update

One of the blessing of being in the Midland Hospital this past week has been that many of the nurses / doctors who were there when Autumn was born, revived her, and worked on her and Jen that day, have stopped down in her room to meet her and encourage us. They have shared their stories of how their lives have changed through Autumn's progress also. It has been such an encouragement to us to see these many people that we owe so much to. We are proud of their work and knowledge. The staff at the maternity floor in the Midland Hospital have become much more than just doctors / nurses to us, they have become like family and we appreciate them so very much.

The medicine that they have been using to fight the infection is not working. The doctors in Midland have consulted with our Ann Arbor kidney doctors through this whole process and have tried a few different medicines, none of which have stopped this severe infection. It is controlling it, but not killing it. As of tonight - they plan to transfer Autumn to Ann Arbor in the morning. So, unless anything major changes overnight, we will leave for Ann Arbor tomorrow. Hopefully while we are there they will perform the surgery to remove her dialysis catheter and broviac IV line (everyone agrees that one of these sites is most likely the cause of the infection).

Please pray for Autumn - that her body will begin to fight off this infection. She is so strong and we are so proud of her. She is a true angel. Also, please pray for Jayna - as you can imagine, she isn't very thrilled that Autumn is going back to Ann Arbor and we will be apart for a while again. She understands that it is best for Autumn, but she knows that it will be hard for her. She is down, so please pray a showering of encouragement and strength for her. Also, please pray for Jen and I. We know and believe that God is still in the process of healing Autumn and is in TOTAL control of her life, but we are tired right now. Lots of sleepless nights and concern for our girls has made us both very weary. Please pray for strength for us as a couple of struggling parents. We are so appreciate to you all for carrying this load with us. We know that it is a burden that God has allowed us to carry because we can handle it. He promises in His word that He won't give us more that we can handle and we are standing on that promise tonight.

Staph Infection

Autumn has a staph infection - they want to watch it grow a little more, but they are thinking they can treat it with a 10 day aggressive antibiotic. After they watch it a bit more they can decide if she can fight it here in Midland or have to go to Ann Arbor.

Please continue to pray for strength. Autumn is 3 doors down from Lena Clarke - this has been quite an encouragement from Lena as well for both of the Clarke and Hess families. God is good.

-Allison

Fever Strikes....

When Autumn woke up to nurse Wednesday Night around 1am Jen noticed she felt quite warm. She changed her and opened her gown up to see if she was just warm; her fever was 101.9 so they headed off to the hospital as directed by the on-call Dr. When they got to the ER her temp was 102.9. (They eventually admitted her in the early morning to the Pediatric Wing, Midland Hospital)

They did blood work and collected some urine and administered an antibiotic. Her fever gradually dropped and stayed around 98 - 99 for most of the day Thursday and her labs appeared to all be ok. Last night (this morning) around 1am she got another fever of about 101. They have her another round of antibiotics and it's coming down again. They found today that in one of the blood cultures that there is an infection somewhere in her blood system. They're going to let it culture for another 12 hours or so, apparently the longer it can have time to grow the more exact they'll be able to tell where the infection is exactly at. Dr. Juarbe will look at the culture again this early evening and then discuss with her Ann Arbor doctors a method of attack on this infection!

Please pray for Autumn's health, and the Dr's as they work to keep her well. And, rest for Jen, the nurses have asked Jen to stay at the hospital since she knows Autumn's routine with meds and changing dressings and flushing the broviac very well. Jen's very tired...Aaron is at home with Jayna at night for now. And, Jayna spent the day with Grandma today. Please pray for all of them that this will be an infection that can be treated aggressively and her body will respond very quickly.

One of us will do our best to keep the blog updated.

-Allison