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!)

Day 2 at home

A quick update and sorry no pictures yet.

Even with all of our help, sleep and rest has been a luxury. We have had some setbacks with eating and the blister prevention. James has had touble keeping his formula down. While this is common for infants, it's a very serious deal for his increased nutrional needs. We've had some progress this afternoon and hope to get him back on track.

It's hard to remember exactly at what point Tony went through the worst phase of the blisters showing up. For James, we already are dealing with it. Every few hours we are finding a few more that need to be drained. Most are small, but each one uses fluids, nurishment and must go through a healing process. We continue to try different ways for prevention and care and hope his skin toughens up soon.

At this point we are struggling with how we are going to manage this long term at home, especially with a toddler. Going to hospital care isn't an easy answer either as it seperates family members and adds another dimension to preventing skin damage and caring for him.

It's hard for us to believe it's only been a few days and we are hoping and praying that we can make some headway in his care. Also to have the wisdom to decide if and when to take him back into hospital care and to what extent we will go. Given what we know, his comfort is our main concern.

We as always covet your prayers during this trying time.

Stu, Tashia, Abby and James

He's Home

Ok, so the last post wasn't very short so no promises here. Mom's a bit run down today so it's good to get everyone home so we can make her sleep. By the way, we were in Ida Grove, not SF hospital. The grandparents came down Wed night and have been helping out.

We are happy and nervous to be home. It's the first child out of three that has skipped the NICU. We know it's the best place for him as the less new people to train for care the better, but it's nice to have the backup at the hospital. Our doctor and hospital staff been great here.

James is a strong eater, but his stomach needs to stretch a bit yet so he can eat more, but he's eating every 3hrs. Even with delicate care he has a few new small blisters. I believe Tony's skin got a bit more resilient as he got older, so hopefully the same will be true for James.

For those not familiar with EB I give a quick run down. Both parents have a recessive gene that prevents him from forming the protein that conecects the top two layers of skin. Without that protein, the two layers can easily seperate casusing blisters with minimal friction or pressure. Also, these blisters can form in the mouth and airways. There are many forms of EB, and unfortunately this is one of the worst ones as far as life expectancy.

Now, the best way to explain how James is doing is to compare him to Anthony. In that regard there is only one area where James is doing worse and that is the missing skin he was born with. He had a tear at his cord like Tony, but also had skin missing off one entire elbow and also the bottom side of the other wrist. There was a small spot on his leg bottom as well.

James' finger nails were much better than Tony's. They will fall off eventually, but they are smaller in size and he was only missing the ones from his thumbs. We are padding his elbows and his legs so we can lift them for diaper changes. His diapers consist of soft cotton for use under casts. One of Tony's worst areas were around the diaper because you couldn't bandage them and they were always getting disturbed.

So far James is feeding much better than Tony and is maybe a bit behind a normal 2-day old. We started the higher calorie formula and will start the Zinc and Multi-Vitamin shortly.

We are staying positive and doing everything we can to give him the best start possible. However, we know that we either will not have him for very long or that he will be a very fragile boy that will have a very tough and limited life ahead of him.

We continue to cling to our Rock and trust in his plan. If God decides to heal him, he will be healed. If not we will do our best with His strength. Please pray for our endurance in all ways, that we will accept help and support and especially for our little guy.

Pictures will be posted shortly, but until then the link below will take you to the hospital photo.

Home at last,
Stu, Tashia, Abby and Jimbo



http://www.hornmemorialhospital.org/baby_bio.php?id=69142

James is Here!!

Unfortunately he does have EB. He and mom are doing just fine right now. This will be a short quick update, but there will be much more to come.

We knew going in that we had this chance and were prepared as we could be. However, what made it more devastating initially was the fact that he had a few large skin tears and since they didn't clean him (our request) it made it appear much worse than it was. Also he had trouble getting enough oxygen at firt. We were forced to make a quick decision to keep him here vs. sending him to a neonatal care facility.

Thankfully, with the extra 2 1/2 weeks, his lungs are good and he caught up after a few hours. Also, after we cleaned up the birth mess we realized that other than the few tears he is doing just fine.

While we are expecting the same as with Anthony, we are hoping and praying for better results. Our pioneering Tony has given us volumes of knowledge to care for James and hopefully prevent much of what he went through.

Mom and dad had their 3hrs of rest and had to feed him this morning :) Our goal is to bring him home tomorrow and have as much normalcy that is possible with a new born.

Thanks for all your prayers. Please prayer for wisdom for us and those that are caring for James. That his wounds would heal and for his feeding.

We are praising God for our gift and know that he will guide us through wherever this takes us. While mourning for what He has and the future that is in store for us.

Oh, and he was born about 11 pm last night, 6 lbs 5.5 oz (give or take some aquaphor) and about 20".

Love,

Stu, Tashia, Abby and Slick

(since mom won't let dad call him Jim or Jimmy, he had to think hard to get his first nickname)

The Waiting Game (for James)

Well, Tashia had pre-term labor at 35 weeks and was admitted into the hospital in Ida Grove 8 days ago (Sunday night). They almost were able to stop the labor, but since their resources are limited for pre-term babies, Tashia took a bumpy ride in the ambulence to SF on Wednesday with Stu and Tashia's mom following.

They decided to let the pregnancy progress once in SF, but after a few more days in the hospital it was clear he wasn't coming yet. So, we have been hanging out in Brandon since Friday afternoon.

Tashia is free to do whatever she pleases and actually has been trying to get the little guy to hurry his arrival. We have an appt. tomorrow (Tuesday) and hopefully we are close. Unless all the signs are there, Stu will have to drive back to Ida Grove to work until he comes.

We are happy that we have made it past 36 weeks yesterday, but we are quite anxious because we were all exited that we would get to see him already.

So far everyone is healthy and the hospital staff(s) are prepped for a possibility of him having EB. He is right around 6lbs right from a few ultrasounds in the last week.

Unless James has pre-term issues such as breathing, we plan on taking him home after the typical 2 days even with EB. To not have to spend any time in the NICU would be a treat!!

Please pray for our patience and health of both Tashia and James.

Stu, Tashia and Abby