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

One Left Standing

Well, we were able to dodge all the nasty bugs around here, but they finally got us. Abby started throwing up Wed night through mid Thursday, but still has the runny diapers. You couldn't have guessed that she was sick as she was her usual self and didn't even cry when vomiting.

Tashia got it Friday night and got over the worst of it Saturday afternoon. It was much harder on her being pregnant, especially throwing up. Her temp never got too high and has been re-hydrating herself.

Fortunately Stuart has yet to come down with it and has been able to keep up with the everyday stuff and take care of his girls. On the upside, it's provided some training for when the baby comes.

James is still doing fine. He is getting a bit cramped and you can feel/see his elbow, knee or some other extremity move across moms belly. Tashia's biggest struggle right now is with her back and getting comfortable in bed. "Only" 8 weeks to go until May 11th. Tashia went on bed rest with 6 weeks to go (34 weeks) with Tony and delivered with 4 to go. We've lobbied for another ultrasound to take some measurements since Tashia never felt the early labor with Tony. Hopefully we will get this in a few weeks.

Abby's friend Jack brought his parents down last weekend followed by Grandpa and Grandma Uken. It was nice to have company and Abby sure enjoyed the attention. They hadn't even been here an hour and Abby was giving Jack kisses. As you can see in the photo, she couldn't quite reach him during the wagon ride.



The Trio will be heading back up to Sioux Falls for Easter this weekend before we hole up at home until James arrives. We will leave you with a picture from Anthony's birthday. We've been running through his pictures getting very exited for our next baby boy.



We as always, appreciate your prayers for James' and Tashia's health and that we can have a timely delivery without any major complications.

Love the Ukens,

Tired, Pukey and Poopy

Happy 1st Birthday Abigail!!!

Time goes so fast now, it's almost been a month since Abby's birthday and just over two months until James is due. Tashia has been taking special shots to try and keep our little kick boxer in as long as possible. So far so good for mom during the 3rd trimester. It's getting harder to keep up with Abby, but everyone is currently healthy.

Hopefully we will get an on line picture site that we upload a lot more photos than what we can put on the blog. Maybe we would update that more often??? In the meantime you will have to settle for a picture from Abby's birthday and one from today. It was finally warm enough for her to wear her first dress. She still absolutely loves to socialize and is always smiley. It's usually hard to drag her way from the church nursery.

Stuart's job is going well. It's been 6 months already, did we say that time goes fast yet? Well maybe not with this winter. It's really hard to be homesick when it looks and feels like Grand Forks everyday. That's not totally true. One day when we checked it was only -9 here and -30 in GF.

Well there isn't much more new to talk about.

What? More about Abby? Well, ok. She's not too tall yet, but can manage to stand on her toes to get at stuff on the counter and tables. Her conversations are really quite intense, however we can't understand them yet. She did finally learn Mommy.

One thing she is quite proud of is being able to walk backwards slowly. She's really trucking around now and is starting to run into things, quite like her dad. Abby gets exited to watch through the storm door at dad bilge pumping the low sidewalk with a broken snow shovel.

It's spring now right?

Till next time,
Stu, Tashia and Abby

Meet James Glen

Well after two months, we have broken the blog silence. It was not our intention, but as new parents we find it easy to get distracted. We did have a computer virus infection, which caused us to reformat, but we did save most of our important files. We are thankful that Grandma Beth backed up Tony's pictures last year, since those were some that we did lose.

On with the update. So far so good with the pregnancy. We had the 20 week ultrasound in time for Christmas and we were able to show pictures of James Glen Uken. James enjoys dumplings with butter, pickles and testing the strength of Tashia's tummy. He has been much more active than Anthony.

As you can see, Abby is a go getter and began walking at the first of the year . Her hobbies include opening and closing doors, reading her books and giving out hugs and kisses. When out in public we always hear comments on what a happy baby she is and how she is walking and still tiny. She does well in the nursery at church and we enjoy the break. She is just about 20lbs and will be 1 year old on Feb 7th.

We are fairly settled as this point and are realizing the climate isn't much different that SD. Although we will still take tonights low of -9 over SF's at -14. Normally Tashia can't stand the cold, but with her pregnancy Stuart is having the worst time with it after losing some of his insulation.

Work is going well for Stuart, the 5 months have went by fast. Tashia is adjusting well to her new career. Grandma Beth thought she is ready for the next step and gave Tashia her first sewing lessons when they were down this weekend.

Thanks for all of you checking this site. I have a tracker and realized there are quite a few waiting for our next post. We do enjoy visitors, so if you are ever in the area or need a destination please feel welcome.

Please continue to pray for James to go full term and to be healthy along with Tashia.

Trying to stay warm,

Stu, Tashia, Abby and James