On Our Own

The last of our family help left at 1:30 and we are now on our own until the weekend. We very much appreciated help from all of our family, including Tashia's mother and sister this weekend And soon after they left, reality hit hard and fast. We had planned to give James a sponge bath and change his dressings while Abby napped. Abby didn't cooperate and since it's a two person job, we had a screaming mad daughter for over an hour. Oh, and besides James peeing on everything for maybe the 10th time (we've get distracted), dad got some dirty jeans from James.

All total it took almost two hours, but it was much needed as the Little Dude was starting to get a little stank going. We were pleased by his wound progress. The elbow and umbilical area look great and appear to be close to or in the scar tissue phase. The wrist hasn't progress much though.

His bottom area has gotten a bit worse. Not many new blisters, but the old skin covering on the blisters has slid off. We now have to be sure to keep that area coated, otherwise he feels pain. Everything that is still covered with the skin seems to also be in the scar phase, but it's hard to know if we can get the newly exposed areas to progress.

We have to take it with a grain of salt, but he did gain some weight back and appears to be at 6lbs 6oz. His face does seem fuller today. He finished yesterday very well for feeding and today was almost as good. James also got to feel the wind in his face as we spent some time outdoors today.

A few of our friends visited us yesterday and we gave them the local tour. It was the first trip out for Tashia since the birth other than to and from the hospital.

As you can see Abby has learned to be gentle with her fragile brother and has been lightly kissing his head and patting his head with her hand.


Well, we are both quite tired and are going to try and get a head start on sleep for the week. Pray that we would be patient and trust that what to offer our children is enough for the moment.

Stu, Tashia, Gentle Sis and Clean Dude

Silky Soft

As you can see James is getting quite the outfit. He now has leg sleeves to match his arms. This helps further protect his legs. Even with the latest diapers, the ribbon knot would still hit his leg and maybe was adding to his blisters. The hat was Tony's and was part of a package that was sent by a lady in Utah. It was from here that we were able to get some of this special fabric to make these clothes.

After a few great days for James, yesterday was a bit tougher. Yesterday morning after midnight his feedings decreased quite a bit. It was obvious that something changed inside that was giving him pain and discomfort. It wasn't until last night that he started getting back to where he was. His average for the last three days was good, but he does need to keep increasing.

The baby scale we are using from the clinic doesn't seem to be the most accurate. Also, it's reading about 8 oz or more lower than the hospital. It's tough to know which weights were correct, but it's likely that he has not back to his birthweight. All infants usually don't climb back until their second week. If the scale is reading right, he's been losing about 1/2oz or holding steady.

Starting Monday, Abby will be going to a home to get watched from about 9am to 3pm and later on some days. This will allow dad to work and mom to have J Glen alone. We may also need nursing or repite care in the future, but probably won't do that at this point.

Abby seems to be doing better since we are home and has learned that James comes first. Her cough is still there at night and was up quite a bit. Thankfully, Grandma Sue and Aunt Chelsie came last night to help as Grandpa and Grandma Uken left late last night. We took a picture of her first fat lip. Dad was taking something away from her and she fell face down. It wasn't too hard, but cut her lip.


Our plan is to refill our sleep tanks as much as possible this weekend to give ourselves as much steam as possible for the week. We will see how we hold up. If James is stable it will help a lot.


Thankful we don't have to rely on our own strength,

Stu, Tashia, Abby and James

Pictures!!!

We've started to upload our pictures. Click on the link to the right to see more of our family. This is a photo from 10 minutes ago. You can see he lost a bit of his chubbiness the last few days. Maybe we can add it back on and then some.

James ended the day with his best total, slightly better than two days ago. He had some big gaps last night, but made up for it with two big feedings this morning, one over 2 ounces! Hopefully he will steadily continue his feedings.

Mom did get some extra sleep because of the less feedings, but still has to get up to pump a few times. Dad did relieve her this morning and hopefully get used to getting up even earlier.

Have a good day,

Stu, Tashia, Glamour Shot and LD

Home Again

James decided to kick his feeding in gear last night and seems to have jumped this latest hurdle. He still needs to continue to improve, but there is nothing the hospital could offer that home can't right now.

He has mouth syrup that has some numbing and other medicines to ease his feeding pain and we also gave him some tylenol. However, he doesn't seem to have pain at the moment and a large part may have been learning to breath while eating. Most infants have a learning curve and loose weight the first week. Unfortunately James does not have that luxury and needs to bounce back sooner.

His weight has been about the same the last few days. Yesterday was 6lbs 13oz and today was 6 13.5. The clinic had a used scale that the Doc sent home with us that will help us monitor between visits. We also have a suction device to aid us if, but more likely when he has choking episodes due to thick mucous.

No new blisters to speak of in the last 24 hours. Time will tell if his open sores will seal shut as we had trouble with Anthonys getting past the last healing stage. The blisters that kept thier skin covering seem to be progressing through the final stages.

Dad was able to make into work for the first time this week, but we still have a long way to go to get into a managable pattern. We are contemplating sending Abby to the same home for the same time period every day to help both her and us to adjust. Last night we decided to come home and give here our undivided attention for a few hours and that was time well spent.

We forgot to mention that Since the weekend, Abby has had a cold and has not been sleeping well. She also seems to be teething again and this afternoon has been in pain.

Mom needs to catch up on sleep so Dad will have to give up some of his that he's been clinging to.

Overall the last two days have been positive and are biggest worries are maintaining a balance to our lives and caring for our Little Dude the best we can. We are grateful for any time we have at home with him and hope it last for many more weeks.

Last night when the grandparents were sitting James, they decided to get the nursing staff exited. Grandpa didn't realize he hit the Code Blue button instead of the nurse call button. When the first nurse burst into the room, Grandma calmly asked for some more formula. Nice to know they are Johny on the spot!

We appreciate all the words of encouragement and it's does help to know you are all standing with us, especially in prayer. Just as with Tony in SF, our brothers and sisters in Christ here are providing for our needs.

Please pray for continued progress with feedings, that his insides would heal and stay healthy and for our patience with calmness with adapting to our situation.


Tired and worried but not quite weary yet,

Stu, Tashia, Cranky, and Lil' Dude

PS - we have to keep the TV off because it drives our Dude crazy when that guy on the commercial keeps saying his name

One more day for the Little Dude

We are going to stay in the hospital for at least one more day. The mouthwash was too numbing, but the tylenol seemed to help. We also have faster flowing silicone nipples now and his feedings were better since midnight. He did lose 1 ounce, which isn't surprising. Hopefully he can start eating stronger to avoid the IV. It it goes well, we will come home tomorrow.

Hardly any new blisters so either his skin is stronger or keeping him cool is working. All his wounds seem to be healing well.

His umbilical cord was really starting to smell bad and the doc was nice enough to snip that off this morning.

Dad didn't well at helping mom out and slept a bit too long. Our goal is to get mom a few naps and for Dad to get to bed earlier. Evenings are always the worst as we are very tired with little patience.

Abby wants less and less to do with us and it will be a slow process bonding with her again when we finally get the time. This is very hard for us to choose between our children.

All we can do is set our sights on the only constant thing in our lives and that is God. It's not our amazing faith, but that we have faith in an amazing God.

Weary,

Stu, Tashia, Abby and James

Back to Horn Memorial

Well it was great being home while it lasted. At James' 5am feeding, he had trouble breathing due to some mucous that must be from his sores inside. His lip area was turned blue after a one minute of eternity, we turned him over and it helped him overcome it.

Needless to say, we weren't prepared for this yet and concerned about dealing with emergencies like this at home. James is stable now and after a visit with our Doc, he is back in the hospital. They checked is vitals and everything is fine. He was prescribed a pain relieving mouthwash and tylenol to help him feed without pain. We will take it step by step and are not starting an IV at this point.

Again, we are reminded of the rollercoaster as there are some great positives since being admitted. First, his new weight is 6lbs 14oz, which is quite outstanding that he has overcome the typical newborn weightloss already given his low feedings. It took much over a week for Tony to get to this point.

Also, his wounds seem to be healing. His elbow is turning pink meaning new skin! He is still getting blisters, but we hope that the colder hospital room will put a halt to this. It's still hard to get too exited knowing it's what's healing on the inside that matters and that more lows are coming.

It's also hard not to question why there are others that are abundantly given children that either do not want them or do not care for them. Someone questioned why innocent parents like us... We wish we were innocent, but like everyone we sin and only by our faith in our Savior are we make adopted children of God. And we know for a fact adoption is great!

We wanted to give you the latest and will try to keep you posted. Hopefully you get a glimpse of how James is doing now. Progressing faster than expected, but stable at the moment.

Making the most of our rollercoaster ride,

Stu, Tashi, Abby and Little Dude (this one seems to be sticking the best)

PS - Dad caught a bit of grief for the b-day picture, but it could have been worse...

Happy Birthday Mom!!

We all just had cake and ice cream for Tashia's 31st birthday, which was today (no we didn't let James have any)

Last night and today were much better for James. His feedings are now consistent and staying down. We switched to pre-mixed formula and now Mom's fresh stuff is keeping up. We are still adding formula to it to add nutrients and calories. Tony didn't get moved up to this level until 1 month old.

We went through Tony's caring bridge site to refresh our memory on symptoms and treatments. To be honest, it was surprising to see everything we went through in hindsight and how positive we stayed through the ordeal. With James, it's much different as we know the likely outcome already. We will continue to be positive and care for him best we can, but the mourning process has already started as nothing short of miraculous healing will see this little guy to his 1st birthday. We are already thinking about funerals and burials when our son is 4 days old. We do have the same eternal hope that carries us through any of our trials. Especially the peace knowing that these bodies are only earthy vessels and that James would join Tony in a place with no pain or discomfort.

A few other things we noticed were that Tony's worst blister days were when he came home with us. This is leading us to believe that the increased handling or the heat build up with the blankets we use is causing more blisters. Since yesterday it's not uncommon to see 5 or more new blisters in a few hour period. Most are small, but his diaper area is showing the affects. Hopefully between changes in how we hold him and keep him bundled will slow those down. Also, Grandma Beth made a few custom diapers with special soft cloth which should he the blisters and the messes.

Also, we were reminded how much time was spent in the hospital and how long it would take to get out. It is alreay a great blessing to be at home already and it's possible that we would not go back until the end.

Overall James is very similar to Tony. He has blisters in his mouth that does affect feeding to some degree. Also there is evidence that he may already have blisters down his airways. Tony had scarring of his eppiglotis (the flap that changes breathing to feeding). It's likely that this lead to Tony's aspiration (food in lungs). Which likely eventually lead to further damage.

James still is doing quite well, but there is not much we can do for preventing internal trauma. It's a delicate balance between pushing his nourishment and preventing aspiration.



It's our intent to finally get all our pictures on the web for all to view. Just keep in mind if it seems we are getting larger, it's because of all the great meals everyone is bringing us, especially all the goodies. We are truly blessed with all the support and prayers we are receiving.

One thing we haven't mentioned is how Abby fits into all of this. It is very hard on her and us as we are focusing most of our attention on James and relying on others to spend time with her. She doesn't know what to think of all of this and it seems like she is growing up so fast right now. It is encouraging to know that if James does leave us that our house won't be so lonely this time. Abby won't let us stay inactive.

We do welcome phone calls and visitors. Who would want to show off a good looking dude like James? Please call before visiting to check if it's a good time and try again later if we don't answer. Incoming minutes are free, so with amount we are on the phone, we would rather take a call and make one.

From the book of Job we find comfort that God is in control of all that affects us. That Satan can only afflict us to the point that God allows. And He has promised to not give us anything more than we can handle. As we know from experience, with His strength, that is a lot!

Thank you for your all your prayers and following our journey. Please pray that we will cherish this time with James and continue to rely on God's grace to see us through. Also, please pray for a friend and her family as her mother has passed away.

Those that followed Tony's journey may remember a friend that we met in Texas who also lost her son shortly after us. Their situation was similar that involved an unrelated terminal genetic disease. They also had another pregnancy that resulted in another son with the same condition. He is now 7 months old and near his end. Please pray for their strength and faith through their trial.

in His peace,

Stu, Birthday Mom, Abby and the Handsome Guy (James of course!)