Sunday, October 26, 2008

Time Flies, Kids Grow



We can't believe that it's been since before our trip that we last posted. Our trip was great and we sure needed the rest and time alone together. We took advantage of the area in many ways. Our favorites were seeing Mt. Rushmore at night, hiking Harney Peak and riding the 1880 train between Hill City and Keystone.

As you can see Abby is growing, we were moving stuff around and she tried out the baby swing one last time. She just moved to the toddler bed a few weeks ago and hopefully the potty chair is next :) She loves watching her movies and her favorite is her Boz dvds.

Hopefully we will get a chance to post more and update our online album over the colder months. Just know if we don't post, things are probablly going well for us. We suggest suscribing to the blog so you can get an email when we update the blog.

As always, we appreciate your prayers as we are starting to think and pray about growing our family. It was decided awhile ago not to have children on our own any more and will soon medically take that option away.

We are at peace with this decision, but it does make us sad to be reminded why. It's hardest for us when time goes by and we don't take time to remember our boys. It eventually hits us when we don't expect it.

There is a song that we found recently that is special to us. It's "Yours" by Steven Curtis Chapman. Earlier in the year He lost his youngest 5 year old daughter, who was adopted. He added a new verse to the end of this song and it sums up how we have hope and joy through the loss we have experienced. We encourage you to download/buy the new version of the song as all the proceeds will go to his adoption chairty.


Thankful that God is in control,

Stu, Tashia and Abby

Sunday, July 27, 2008

Change of Plans




A few days after we posted last we changed our trip plans from Maine to the Black Hills. We finally found good prices for flights, but it would mean driving to Omaha and flying into NH. We weren't able to use frequent flier miles like we had hoped. The next morning the prices went up but we weren't ready to book, then they jumped again that night.

We discussed our original options and decided that a trip to the Black Hills would not only be cheaper but would also fit our goals better for the trip. This trip is to reconnect and strengthen our marraige. Flying to a new destination and having to plan, see and do would likely get in the way. It's still on the list, but will be another year.

This will also allow us to use the Labor Day Holiday weekend without worrying about expensive and busy airlines. We will start the vacation off on Thursday as we will go to Ames to watch SDSU play Iowa St in football. Then on Friday we will go to Sioux Falls to spend time at Life Light and with our family before we leave Abby with Papa and Nana Uken and take off for the Hills early Sunday.

We have a bed and breakfast near Hill City reserved from Sunday night until we leave Saturday morning. Stuart is familiar with the area and we will do some moderate sight seeing, but will still leave plenty of time to relax and enjoy the area.

The last few weeks were a little busy with less sleep. We helped with VBS last week, which was in the evening and we also had our wood floors on the main level refinished. Tashia went back to SF for a day with Abby. This meant we had to fit everything into our kitchen, laundry and porch. They turned out well and we are proud to say that we now have pictures on the wall in less than 1 year this time!!

Abby kicked this week off with a high fever that lasted four days. Her temp was hitting 105 with both Tylenol, Ibuprophen and sponge baths. It was likely Roseola, which is a low risk viral infection that infects kids under 4. She did get the tell tale rash after her fever broke. This was very tough for us in two ways. As with any parent, it's hard to see your children suffer with nothing you can do to help them. It's amplified after what we have been through with our sons. All we long for is healthy children at this point.

Even though we trust in God's plan and have no reason to believe that he would take Abby, we still have to contend with the fear that we would lose her. This was very strong as we went to the clinic not knowing if it was a severe infection and then a few days later to the ER after the fever kept going up. We have been there too much.

Otherwise things have been going well. Stuart has been golfing more this summer. He will also be traveling to East Iowa next weekend. There is a mandatory meeting relating to hunting on the Iowa Army Ammunition Plant land in Burlington Iowa where he plans on hunting in December. It's a large area of federal land surrounding the plant and drawings are held to gain hunting access. He will be joining a college friend and others.

Tashia continues to do much better at the fitness plan the Stuart. She's well on her way to her goal and has decided to join Stuart in running the Hobo Day 5k this fall. She had a slight setback with a painful foot, but thankfully that went away and wasn't a fracture or sprain as we had feared.

James' gravesite marker has been placed and we are anxious to see it. It's nice to have his and the others' pictures on the walls now. Hopefully after Stuart gets back the memorial garden will make it to the next phase.

That's it for now.

Trying to stay cool, fit, and healthy,

Stuart, Tashia and Little Miss Abby

Tuesday, July 8, 2008

Starting the Next Chapter

It's been over a month since we last gave you all an update. If you have followed us for awhile, you probably guess things are getting back to normal and our posts will be more sporadic now. I'm sure we will have plenty to share about Abby and will try to have photos as well.

Our most exiting news, well to us anyway is that we are planning a trip for the two of us this fall. We went to Florida the January after Tony passed away and found it to be an important reconnection time for us. This time we don't want to wait as long and will hopefully be booking flights this week for a September trip to Maine. We wanted to pick a place neither of us have been to before. It will be a 5 day trip and we will see some sites but will focus more on relaxing together.

Tashia has been much better at exercising and losing weight so far. Stuart came down with a typical sinus infection after the 1st week and hasn't gotten back on track since. We ran/walked a 5k together and both hope to run one together in October. After recovering from her own sinus infection last week, Tashia now has a pain in her foot and is either a stress fracture or tendonitis. This is a big bummer for her as she was really wanting to get into the running routine.

Abby is doing great and is still keeping us moving. She's adding words to her vocabulary and can understand most basic commands. Last week she crawled up on the chair at the table by herself. We decided she deserved to use a booster seat now like a big girl. She got to go to the wading pool twice today. She seems to enjoy the water, but also will just stand and watch the other kids play.

Reina is doing well with the underground fence and seems to enjoy the extra freedom. It makes it easier for the family to hang out on the porch with out getting tripped by her old tie out. The cat is doing fine and Dad has learned not to get her riled up when Abby is around. Otherwise she tends to lash out at Abby.

We made it to our Tony and James' grave sites this last weekend. We meant to go last time we were in SF, but missed the closing time and had to wait until now. It was much harder not being there for Tony's birthday (6/21/06) than we thought. We almost drove up just for the day but ended up waiting. We aren't sure if we mentioned it before, but James' site is just two to the south of Tony's which is nice. His marker has been ordered and should be placed in a month or two.

That's all for now, hope to give some more info this week. It gets eaiser every week, but even though we have been here before it still can be a strain on our lives as well as our marraige and family. We also have some big decisions to make on family planning options. As always we thank you for your prayers.


Trusing God and Renewed Daily,

Stu, Tashia and Little Fish

Wednesday, June 4, 2008

Day by Day

This has been quite a gap after the almost daily updates about James. Our tracker shows that there a lot of people that are still checking in on how we are doing. We greatly appreciate that.

We are now half-way through a "normal" week and it has been good to move forward but also very tough at times. The hardest part is that we are both away from each other for a much longer period than we are used to. Dad is back to work full time and mom is holding down the home front, which was a bit behind to start the week.

Today has been one of our worst days and we are looking forward to the weekend. It's hard to remember exactly how we dealt with it after Tony but it's good that we don't remember those things. We do know it gets better with time. Another reason today was tough was some bitter sweet news we were alerted to yesterday.

There was a couple with four children and two had a severe form of EB. Last fall they lobbied and were allowed to try a potential break through bone marrow transplant on the youngest brother using stem cells from one of the healthy older brothers. They just released news yesterday that it seems to be working and may be a cure for EB.

Obviously we are overjoyed for them and all EB families as we know how hard you hope that your child would be cured. This is providing huge hope for them all and shows promise. Besides revisiting the facts of EB, we were reminded that it's too late for our two sons and it would also be a longshot for any future children. We will be going into more detail on that and provide a link to the stories in a future post. Consider that our cliffhanger for this episode.

We both decided to set aggressive goals for losing weight in the next 4 weeks. It's something we wanted to do and decided it may be good to keep us active. Yes some of the blame is from all the wonderful food we were provided for the last month and we would eat it all again if we had the chance! So far it's tough getting up in the morning to exercise, but Abby assures us she would help with that regardless.

She has been good at night until last night and may have some teeth on the move again. It's fun to watch her smile and laugh with her new chompers. She has a new chuckle she likes to show off. Abby still says hi and bye to everyone she sees, usually more that once.

Another goal we have is to get started on a memorial flower garden in our yard. We were sad to leave Tony's in SF and learned that it was very helpful for the grieving process.

Again, we are amazed and overwhelmed by the condolences and comfort we are receiving from all. We can't thank you all enough for everything you have provided and continue to provide for us and our family. We truly feel loved and taken care of.

One of our biggest challenges is to continue to rely on God's strength to get us through. It's easy for us to think we can handle things on our own, especially when things go well in life. We must remember daily to surrender to the one in control and that is when we truly find peace.


Still drained, now with sore muscles,

Stu, Tashia and Miss Social

Monday, May 26, 2008

A Better Day

Yesterday we packed up James' things but didn't have much energy to do anything else.

Today was much better. We were able to pick up and tidy the house and have finalized all the funeral details. It was a very nice day out and spent time outside for part of it. Family arrived for supper and we are all in better spirits.

Abby was having a great day until she slipped on the front porch steps. She managed to hit and scrape her chin, lip, gums around her latest tooth and her forehead. It's not as bad as it sounds, but it's changed her outlook on the day.

Even if we don't bandage her wounds, they will heal and disappear in a few days. Of course our minds will almost always realize that to her brothers, this would be a disaster. We have to balance between being overly protective and concerned for our only child and being under sympathetic and concerned because we have seen the worst.

We are both looking forward to the services so we can move and dreading going through this a second time. It's a rare event that parents have to bury a child and we will do this now for the second time. We also look forward to celebrating James' life and giving glory to God.

Please continue to pray for healthy grieving for our family and safe travel for all.

Comforted by the only One who truly understands,

Stu, Tashia and Tough Girl

PS - we forgot to leave the webisite for Abiding Savior, the location for the reception on Wednesday. We should arrive around 11:45

www.knowingthesavior.org/

Again all are welcome to come to one or all of the services/receptions.

Sunday, May 25, 2008

Details

Going through the arrangements during these times isn't easy or enjoyable. However, it's a necessary step in the process. Even though Abby keeps us busy, we are still tired and weary. We know by experience that it does get better with time.

Below are websites with information for this week. The link feature still doesn't work for me, so you will have to cut and paste.

Hills of Rest (burial) - www.hillsofrest.com/

Arthur Evengelical Free Church - www.arthurefc.org

Ida Grove accomodations - www.idagroveia.com/Resources/pages/aboutig_business.html#Anchor-44867

Funeral Home Site www.christensenhuffman.com/

That's all for now, keep visiting for more.

Stu, Tashia and Abby

Saturday, May 24, 2008

Tuesday and Wednesay

It's a bit lonely and sullen even with the family around. We thank God that we have Abby to give us a lift. She is going to keep us active for sure. Her two top front teeth have broken through, but they are still making her a bit restless at night.

Nights are especially lonely since we had to have James between us in bed at night to make sure we heard him cry and breath. Our sleep has been sound and eventually we will be back on a normal schedule.

We were dissapointed to find out the casket has to be closed. Besides kissing him goodbye one more time, we wanted everyone to see him that haven't had a chance.

Services will be Tuesday and Wednesday. Tuesday there will be visitation from 9-11 at the Arthur church with a service at 11 and reception following. Wednesday we will have the burial service at 11 am at Hills of Rest in Sioux Falls, followed by a reception at Abiding Savior.

All are welcome and invited at any of the services. Please pass this on to those you can. We will provide directions and other information in the days to follow.

Missing our Little Dude,

Stu, Tashia and Abby.

Friday, May 23, 2008

Home with Jesus

James passed on to his Heavenly home at 3 am this morning. He proved to be quite the fighter.

Check back for information on the services.

Please keep our family in your prayers.

Resting,

Stu, Tashia and Abby

Wednesday, May 21, 2008

Final Moments with our Son

We checked back into the local hospital Monday afternoon. James was back to about 6lbs and none of the meds have stopped his fluid loss. His fever did break.

All of our attempts to get him fluids at the hospital failed and we have decided that He is ready to go home. This was Monday night and amazingly he is still with us. He is a very strong little guy if only his skin were so...

We are expecting him to leave us at any time and the family is all at the hosptial with him. It may not be right away, but we will still update this site with the news and information to follow.

Weary and relying on God's strength and peace,

Stu, Tashia, Abby and precious Little Dude

Saturday, May 17, 2008

Rolling with the Changes

Go figure, it wasn't even 30 minutes after typing the last update that the Little Dude decided to start throwing up. It was only a few meals yesterday. Today proved much tougher for him. Since 5am he's had over 15 diaper changes and his stools are totally runny.

He also has been running a temp and hasn't slept for more than 10 min straight. So around 6 we took him to the ER. There's no acute care here, but we got service right away. We did take him home with the plan of giving him the Tylenol with Codine every 4hrs along with continuing the stronger doses of Imodium AD. He also was started on some oral antibiotics this afternoon. They started one bacteria culture from the stools and are trying to collect more. However he's only had one right after getting home, so that's good news.

James is also looking a bit better. He was looking really rough at 6 and still is pretty wiped out. Good thing he's been gaining weight. Hopefully the next dose of Codine will knock him out and give him some good rest. The bad side to that is it's tough to wake him enough to eat.

Needless to say it's been a rough day. This is why we are reluctant to give such raving reports like the last because we know days like this are right around the corner. Since this has come on fast we think it is likely an infection either viral or bacterial. His wounds haven't looked infected so we are surprised to see him like this. We are hoping he turns the corner on this so we don't have to have an IV as we doubt there is much experience here giving 7lb kids IV's. That and we saw how hard it was with Tony.

That said, the weather has been great and we both slept well because one Grandma took care of James and the other Abby. And of course we still felt tired in the morning. We hit two quick rummages before giving our nickel tour to some friends visiting from Sioux Falls. After that we spent a few hours at the park with the kids. Surprisingly our daring Abby is scared of the swings.

Dad is well into his project of installing an underground dog fence. Reina should enjoy her expanded territory and it will be easier on us. The cat has been sneaking out quite often with all the company and Dad had to climb out on the roof to get her while installing a window AC unit.

Even with the extra sleep we are quite exhausted from the the emotional drain today. Even though we know he would be in total peace in Heaven we are scared to have to let another child go. It seems like well over a month that we have been out of the hospital the last time, but he's just over 3 weeks old and still seems to be progressing much faster than Tony.

We are continually strengthened by your prayers and request them even more for endurance, wisdom for decisions and most of all comfort and healing for James.

All we can do is trust, pray, praise and do what we can for our family.

Stu, Tashia, Abby and James

Friday, May 16, 2008

Scheduled Chaos

This week we have been doing much better at getting into a rythym and schedule. Our sleep schedule seems to be at a sustainable level and we are both able to care for James and spend some time with Abby. Grandma has been a big part of this and the question is can we do it without extra help next week.

Abby is teething her center top teeth. She already has the next set of upper teeth and center bottom teeth. It hasn't been as bad at night as in the past, but she has been more cranky overall.

James is gaining weight. How much exactly is tough to tell. We are confident that is at least 6lbs 13 oz and possibly 7lbs now. His feeding was outstanding at the beginning of the week, but has struggled the last few days. This is partly due to the fact that we tried Tylenol with Codine, which knocked him out too well. This made him too lethargic to keep up his appetite. We will either try a half dose or save it when he is in more pain. Maybe we can just drug our kids at night to get our rest!

Little Dude continues to heal, but also continues to have new blisters. There have been a few that have appeared on newly healed skin on his legs which is always dissapointing. We continue to try new methods to heal and prevent blisters. We still hope that we can get the healing to outpace the damage of skin. Time will tell on this.

Other than a hoarse voice, his insides seem to be stable. No gagging episodes since we went to the hospital and breathing seems ok. Sometimes there is gunk in or behind his nose that can affect eating.

His stools might be getting firmer. This is nice because instead of many runny diapers we hope to keep it to just one or two a day. We have doubled the does of Imodium AD and the Codine may have helped this also. We have stopped the breast milk as the pumping is done. We do have a few days supply in the freezer in case we need to loosen things up.

We urge you to read an article by cutting and pasting the address below: (can't get the link feature to work)

http://www.hattiesburgamerican.com/apps/pbcs.dll/article?aid=/20080511/lifestyle/805110325

This article may help explain the hope of miraculous healing that we have for James. What it doesn't mention is that parents in situations like these have other options. Ones that we honestly never for a moment considered. We could have finished the gentetic testing and determined that James had EB before birth. We shudder at the thought of the options that follow. Either playing with lives by deciding which embryo's get chosen or even worse killing a life in the womb. Unfortunately this does often happen and with children that have non-fatal diseases or even none at all.

Also understand that even without a miracle, we have a hope that drives us everyday. That if James passes on before us, he will have full healing and total comfort in Heaven with Tony. The fact that James is now comforted and cared for by the same Loving God as us gives us comfort everyday.

Please pray that his wounds would heal at a faster rate than his skin is damaged, that we would find a schedule and pattern of life that would work long term and for miraculous healing for James.

Stu, Tashia, Chompers and Larger Dude

Monday, May 12, 2008

Baby with a Blue Dress

About a month ago we took Abby in for her first photo shoot. You can view the photos online and even order them if you wish. They will be available for viewing until May 21. Click on the link below and type in uken for the password.

http://www.photoreflect.com/pr3/ThumbAccess.aspx?e=3647458

The last two days have been much better for Little Dude. Both days he's matched his highs for intake. With the extra calories he's around 140. His weight has been moving back up as well and hopefully continues. He keeps it down well which is good because Tony had reflux issues. James does well belching. Not sure who he got that from, we'll let you all take guesses on that.

His wounds seem to be doing better and likely is the result of extra calories and nutrition. We think his elbow is now to the scar tissue stage meaning it needs only protective bandaging. Scabs are falling off his early leg wounds and are leaving pink skin as well. His bottom is still bare but isn't as raw and shows signs of repair. The wounds that are still not sealing up are the wrist, belly button and his original leg sore.

We haven't had to lance as many blisters the last few days. Grandma Beth will be back tonight and with her help we can hopefully get new clothes to help prevent them better.

To give you an idea on how many blisters have formed, we started using a box of 100 lances almost 2 weeks ago and we only have half a dozen left. We usually lance multiple blisters with each one. Dad wasted one tonight after accidently slicing his thumb. Many are blisters that refill, but the majority are new. We don't remember Tony having this many.

Thankfully most are small, pencil eraser size or smaller. But there are the occasional large ones. Regardless, it's tough to watch our little man go through this and when we step back and look we realize he's similar to the scary pictures you may have seen on the web for EB.

If we keep him lubed up with Aquaphor it does help his tempermant and the gas drops do seem to be helping that effect. We started trying a new product called Desitin Clear. It's their version of Aquaphor and seems to work well on his bottom. It applies very gentle and seems to be protecting between diaper changes.

We did get some rest, but it may be a long time until we feel fully refreshed. It will help having more help this week and Abby may stay longer at day care for a few days a week.

Thanks for keeping our family in your prayers.

Realizing that Spring is here to stay,

Over Fed, Mothers Day Award Winner, Poser and Scale Tipper

Saturday, May 10, 2008

Refilling the Tank

There's still one thing worth more than gas right now and that's sleep. We caught a few extra hours, but need quite a bit more especially after the last few draining days.

James ate well yesterday but is slower today. His weight gain has stalled for the moment and is at 6lb 8oz. We decided to increase from 26 cal to 30 cal. For comparison, regular formula and breast milk is 10 cal, so we are adding 50% more just to try and get weight gain. We also are using half breast milk and half formula to see if that change will firm up his stools.

He still seems to be in pain and it's tough to tell if it's just normal infant gas/bowel pain or from wounds. We assume that much is from the latter even though it's likely "normal" to him. If/when things get worse we will be considering pain management, but for now he's just getting tylenol.

Yesterday morning was very tough as he had some blisters start on his back. This area of the skin seems to be thinner and they spread fast. We seem to have contained it to a small area, but it's not fun to drain a blister larger than a grape.

Our spirits did get a lift with the arrival of family last night. Today we ventured out of town to the metropolis of Storm Lake for a quick Walmart stop and some good Mexican Food.

We can say it enough. Thank you to everyone that is providing meals, a helping hand, encouraging words, lifting us up in prayer and everything else. You have all been such a blessing to us during this trying time. We are also thankful that most of James medical needs are being covered by insurance and have no financial concerns at this time. Some families with EB kids are paying over a thousand dollars a month to bandage their children, some who will live past 30.

Our prayers right now are for endurance, rest, healing and comfort for James.

Tired, but very thankful,

Stu, Tashia, A Marion and J Glen

Thursday, May 8, 2008

Is it Friday yet?


Last night took a few more hours of sleep away from us. Abby has been getting up early and last night needed to be rocked back to sleep twice. A typical night between 9 and 7 includes at least three James feedings and a few pump sessions.

James currently requires the full attention of 1 parent at all times. Sometimes he will stay content in the crib for about a half hour before getting cranky. We try not to let him stay cranky because his voice is now gone and he gets figity and causes more blisters. We are going to add gas drops to the medicine list to ease that pain as that accounts for a lot of it. So far the stools are still runny and can explode at any moment.

When Abby is around 1 parent can manage both kids only for very short periods. James requires too much attention and focus which leaves Abby starved and getting into mischief. Since Dad works when Abby is being watched, that really leaves zero time for ourselves. It does take it's toll and we are longing for a break this weekend even if for a few ours out of the house together and a few more hours of sleep.

It seems as if James is still gaining weight but the scale didn't move up the last two mornings. His feedings are as strong, but he has compensated by eating more often. He now coughs an average of twice a feeding and this really wears him out.

His skin is still progressing along with signs on the inside as well. His bottom is the same and it's likely that the rest of the wounds are healing slower now. With that great week he had we were getting more optimistic, but the last 3 days are what we expected. It just seems faster that it progressed with Tony.

James is feeding better, but that may be attributed to higher calorie formula. It wasn't until we were home with Anthony in his 4th or 5th week that he was coughing and this hoarse. Not great news, but that's the way it is with these kids.

We did talk with the nurse educator from Debra (the non-profit EB cure and resource organization). Not much new we didn't already know, but she did mention siblings almost always have the same severity of the disease.

The hardest part right now is seeing our Son suffer and know there is little we can do about it. We pray that if it is not God's will to heal him that his suffering will be minimized. Though we love him so, there is also a selfish part of us that want to be relieved of the resposibility of his care.

We hope James is touching your lives like Tony did for many. As long as he's with us we hope to share him as best we can.

Abby has been enjoying her day care and has been doing some exiting things. She likes the sandbox and playing with her new friend. We measured her today and she grew over an inch the last month. She is so big now compared to James, but most kids make her look petite. She seems to be adapting and just wants some more attention.


Longing for peace for James,

Stu, Tashia, Sprout, Jimbo

Tuesday, May 6, 2008

Hungry and Cranky Dude

Little dude is getting bigger. He weighed in at 6lbs 9oz this morning and he was also weighed at his doctor appt. and he measured the same. It's very likely that the hospital scale was off. It's tough to say if his birth weight was accurate, but the good news is he is steadily gaining weight now. He now eats less often because now he gulps down over 2 oz. He's up over 120 cal/kg/day now and we hope to keep him there and more. He does aspirate and cough about everyfeeding, but he seems to be dealing with it at the moment.

The downside to eating more of the fortified milk, is that his stools are now runny. He usually dirties about 3 diapers in 30 min or less about once a day. This keeps us busy and is hard on his bottom. He also gets very cranky before hand and has his fare share of gas as well. We will try some medicine to slow the stools down and help him keep some of the fluids.

James' crying is now hoarse and sometimes silent. It's another reminder of the internal trauma. Tony's vocal chords showed scarring on his scope.

His blisters are a bit worse the last two days. We aren't exactly sure why, but he is a bit more active and now that he's taking more fluid that may cause them to spread faster. It's frustrating to see this at this point as we really want to turn the corner. It's getting hard to stay energetic and creative in trying to find better ways to protect his skin.

We've had some great help this week with watching Abby and house chores. It's allowed Dad to go to work and James to have 1 on 1 attention. Abby seems to be adapting and a regular schedule will help that.

It's nice when picking Abby up because she's eager to see us and wants to be in our arms. That's a great feeling especially right now. We can't help but think that God feels the same way when we call him Daddy and rest in his arms and rely on his strenth.

Please continue to pray that we would get the needed rest and the wisdom to prevent and care for his woulds. That James would have comfort from pain, that his wounds would heal, that he would continue to gain weight and eat well and that his stools would firm up.

Adjusting to our new everyday life,

Stu, Tashia, Abby and James

Sunday, May 4, 2008

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

Saturday, May 3, 2008

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

Thursday, May 1, 2008

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

Wednesday, April 30, 2008

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

Tuesday, April 29, 2008

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

Monday, April 28, 2008

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...

Sunday, April 27, 2008

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!)

Saturday, April 26, 2008

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

Friday, April 25, 2008

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

Thursday, April 24, 2008

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)

Monday, April 14, 2008

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

Sunday, March 16, 2008

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

Sunday, March 2, 2008

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

Wednesday, January 23, 2008

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