January 31, 2007, Wednesday

Good morning,

I thought I'd do an update myself. Larry plans to upload pictures at lunchtime today.

BIG NEWS
Yesterday morning (just before I headed to Altus) Tommy got to take his first bottle! He did so well after the nurse burped him, she let me feed him too. Normally they feed the first bottle and mom/dad can try the next one. He will take a bottle every 12 hours. Once he finishes the whole bottle, they'll increase his bottle feedings. Tommy weighs 1576 grams (3 lbs 7 ozs) and has taken two more bottles. He continues to take more at each feeding, so this is wonderful progress.
His hand looks almost totally healed after being on the antibiotics.

My eyes
On my way home yesterday I had to stop in Lawton for a check up on my eyes...I was so excited after his bottle...on the way to Lawton I was thinking of what I'd say on the blog and how I'd say it...Larry normally updates it but with my excitement I didn't want to wait.
Well...that fire burned out fast...my eyes have improved from a month ago in the hospital, but during the exam part where they try and find the 'right' prescription to 'fix' your eyes...they were unable to improve my left eye. I didn't even consider this an option...in my fairytale world it was not an option. That just made my stomach sink...I sincerely thought at this appointment they'd just update my prescription and send me on my way. Instead I have to follow up in 3 months...just before we move to Germany! To top it off, the doc and her tech (that saw me) have terrible bedside manners...I'd never "choose" to go back. I learned the difference of an optometrist and an opthamologist...never even crossed my mind. When I asked if I could be followed by an optometrist, she replied "can I answer that in 3 months"? Not the warm cozy feeling of 'everything will be just fine' that I planned on receiving!

29 Jan 07

Only a quick one this morning...

Turns out that Tricia's "motherly instincts" were right about Tommy's hand...it was infected. They started Tommy on some oral antibiotics last night, so we should see a quick turn-around by tonight. They did a white blood cell test on him, and it came back indicating that he was fighting an infection.

Also, the good news for today is that he should start bottle feeding! The Dr. said that as long as he hadn't lost any weight yesterday, they were going to start the slow process of switching him from the tube to the bottle. They were a little concerned that the extra calories he uses for bottle feeding might take away from fighting the infection, but we'll see...I am excited to see how it goes, as Tricia tells me that he always roots around when she is holding him.

Got to get Kimberlyn to school and then myself to work!

27 Jan 07

Weekend Visit
We are back in town now...and we had a great visit! Thanks to David Carriker for watching the Nance Zoo! Tommy looks a lot more filled out then he did last weekend. He is up to just shy of 3 pounds 6 ounces!

His hand is getting a lot better--now they think that the last time they flushed the IV line, the vein may have ruptured and put the sailine solution into his hand instead of into the vein. It is still a bit red, but the swelling went way down, and it should be completely normal soon.

Tommy now weighs just over 1500 grams, so he will start bottle feeding this comming week--perhaps as soon as tomorrow. It will be very gradual like everything else has been. But, that is very exciting for us.

In the last couple of days, he has had lots of episodes where his breathing rate drops and causes his oxygen level to go down. They still say that this is fairly normal, but he had gone almost a week with only a few, so we were a little bummed about that. They increased his caffiene intake today to help combat that. Now he is up to one cup of coffee in the morning and one in the afternoon--hee hee.

Everyone I know has been asking for more pictures...so here they come!!


Tommy with his IV for the blood transfusion


One happy momma. Tommy's one month old!


The nurses made this one month old certificate, and they all signed it. Tricia LOVED that!


Tommy wide awake. You can see the nurse sucking the remaining milk from his stomach. Also, you can see his left hand is elevated to help the swelling.


Proud Dad--once I saw Tricia's picture like this, I had to have one too!


This one was taken today--Tommy with his cool clothes on!



The kids and mom went to build-a-bear in the mall and spent some of their extra money from Christmas while I visited Tommy. I am bummed that I missed their fun, but only getting to see Tommy a couple days per week stinks!

26 Jan 07

Tommy Update
The kids and I are headed back up to OKC right after school. But I wanted to make sure to keep everyone in the know about the most recent updates! We will be back by 4pm or 5pm on Saturday.

Tommy now weighs 3 pounds 3.9 ounces!!! He is doing just great. He'll probably start bottle feeding here in the next 7-10 days, so that is exciting. He already sucks on his pacifier every once in a while, so hopefully, he'll do well. He is up to 25ml's per feeding which equates to a total intake of about 6.7 ounces per day!!

His brain ultrasound came back with slight improvements--there are two ventricles in the back of the brain through which the blood drains. One ventricle has stayed the same, but the other seems to be draining better. The Dr.s still are not too concerned about anything at this point. They tell me that as long as things don't get any worse, we'll be okay.

One very minor negative note to add, though--The nurses showed Tricia that Tommy's hand was all swollen today--the Dr. thinks that the "board" that stabilized his arm when he had the blood transfusion IV (they left the IV in for a couple of days in case he needed more blood) was taped too tightly. They took an X-ray of his hand to make sure that no damage was done to his joints. I guess when a baby that small has swelling, it can actually pull apart the joints of his fingers. But, the X-ray showed all was well. They'll watch the swelling in the next 24 hours to make sure it goes back down. Tricia said they thought it would be back to normal by tonight. While I wasn't too happy about the fact that this could have been caused by one of the nurses, I am glad they took the X-ray and found no damage. Everyone makes mistakes, so if that is the worse mistake someone makes, I'll be a happy guy!

Tricia also told me today that she found Tommy's hat--the one Grandma Emerson (her mom) gave him. It got put into the hospital's wash and was lost for about 2 weeks. But, the nurse took her back where they have all the clean linen, and she found it mixed in with all the other hats that they had. To me, a guy, this is not a great and wonderful moment, but Tricia is very sentimental about that kind of stuff, so she was bouncing off the ceiling when she told me! So, I'm glad she was able to find it.

That is about it for now! Thanks for all you do and all the prayers! We truly enjoyed our meals this week--like we do every week! It is so great to have a nice warm meal to eat without having to make it yourself! We are so blessed to have you all as partners in this really tough time for our family. But we are all doing well, and a large part of that comes from your prayers and incredible generosity.

My thanks goes out to each and every one of you!

24 Jan PM

Tricia is safely back in OKC now...and probably is holding Tommy as I type this. I am not positive on his weight, but I know they increased his feedings to 22ml's. They also told Tricia when she called today that his red blood cell count was slightly low, so they gave him about 21cc's of additional blood. At first, we were pretty alarmed about that news, but we remembered that the Dr. told us that is was highly likely that sometime during his stay, Tommy would need some extra blood. The nurses said that we shouldn't worry about this at all and that premature babies often require additional blood. Of course, I also did some research online and found that in the first two months of life, premature babies often require blood transfusions because of anemia (low red blood cell count). I guess that they don't actually begin producing their own blood until after a few weeks from being born. So, again, we are just hoping that this is like they say--no big deal and expected.

I'll get some better updates in the morning after Tricia gets to talk to the Dr. face-to-face.

The kids are doing well again--the bedtime routine tonight was back to normal, and Kaitlyn has pretty much fully recovered from her fevers and sickness. I can't say for sure that having Tricia home helped that part, but it definately didn't hurt any!!

That's about all the news I have for now. Here are a couple of recent pictures!

Tommy hanging out

When he is on his tummy, Tommy likes to scoot himself to the very top of his bed. The bed itself is on an incline....you can see that he has sucessfully gone about as far up as possible!

When we got home Saturday, there was about an inch of nice wet snow--perfect for making a snowman! We used almost all of the snow in the front yard to make a snowman and a small snow fort! But, alas, the 40 degree weather the next day made poor frosty and the fort melt back into a pile of water. It was fun while it lasted!

23 Jan 07

Lots of changes
Okay, Tricia came home today...I recalled her home as Kaitlyn was starting to get sick, and Kimberlyn and Robby have had terrible problems getting to sleep, and the only thing I could figure was that they were really missing her. So, she is home for the night, and we are going to try to keep this schedule such that she'll come come Tues night and we'll head up Friday night--to help spread out the visits.

Tommy got his IV line taken out, and they jumped his feedings to 22ml's every 3 hours or just about 6 ounces of total intake. He is up to 1376 grams which is still just over 3 pounds. So this all means that he'll (hopefully) never have another IV line stuck in him again!!! That is great news.

But, rather than chat here, I'm going to take some time to visit with Tricia!!

22 Jan PM

Tommy
Tricia says Tommy is still doing great. He is up to 19ml's per feeding which amounts to just over 5 ounces of breastmilk per day. Once he gets to (and tolerates)20 ml's, the Dr. told Tricia that they will remove the IV line. They also started him on vitamins today--it just goes into his feeding tube. That will replace the specialized cocktail of nutrients that he got through his IV.

Tricia has sounded pretty tired each time I talked to her today, so keep her strength in your prayers. Kaitlyn did not feel well this morning, so she stayed home from school--which meant I couldn't go into work. So, I got several loads of laundry done and the dishes taken care of. I actually managed to clean up the kitchen so it doesn't look quite so messy.

That is about it for now. My goal is to be in bed by 9pm! So, we are starting bedtime routines early tonight!!

20 Jan 07

Exciting News!
Wow--what a GREAT VISIT for all of us this weekend!!!
Tommy was moved again to what they call the "satellite" portion of his care-it is down the hall from the NICU and is where they put babies that are doing very well. He still has the same around-the-clock care, but it is kind of like an upgrade in his status. Praise God!! He actually got moved Thursday night when we got into town. Tricia went up there while the kids and I had fun in the pool. At first, she was freaked out that something bad was going on, but they told her that this was a good move and not to worry at all.

Tommy now weighs a whopping 1369 grams (about 3 pounds even--3.018 to be exact). He is up to 17 ml's per feeding which equates to about 4.5 ounces per day.

They even had him dressed in the clothes Grandma gave us too!!! Of course, we left the cameras at the house in our rush to get out of Altus before the weather rolled in! AHHHHH.

But, the very best part happened at 1130 today. And, if you don't think this is a "God thing" then you are CRAZY! The kids got to see Tommy through a window. Okay, so that does not sound like the best part to many of you, but I can assure you that IT IS! Like I have said before, the kids have been dying to see their baby brother. And, this "satellite" place has windows all over, so I asked the nurse if the kids might be able to look and see Tommy (the windows all have blinds over them). They let the kids into the first room which has windows without blinds, and the nurse held up Tommy for them all to see. When Kaitlyn was saying her prayers tonight, she prayed (like she always does) for Mommy and Tommy and then, at the very end of the prayer, she thanked God for letting her see Tommy. We talked about that for a little while. I asked her if she thought it was interesting that the very night that we got into OKC, Tommy was moved into that new room--and that they let her come into part of that room to see Tommy. I reminded her (and myself, for that matter) that God knows our wants and our needs, and that He decided that it was time for her to get to see Tommy because He knew just how important it was to her. Some might argue that it was a coincidence, but I know better. God was looking out for our kids, and if there is one thing in this whole world parents of all aged kids can remember, it should be that God loves our children even more than we do. How awesome is that?

Tommy's IV fluids are also dramatically decreasing, so we really think he should be completely off them very soon. And, the episodes when his oxygen saturation rates drop and/or is breathing rate drops are down to almost zero.

So, from the sounds of it, Tommy is doing just great! And that is just what I needed after having a really tough week. I am finding that juggling work and home as a "single parent" right now is VERY hard. I have only a few minutes each day for myself, and by Friday, I was completely wiped out. I just felt like I was at my maximum level of emotional and physical level of stress. Luckily, someone at work noticed that, (my previous boss--Lt Col Carriker), so his wife decided that she would pick up Kimberlyn for me from mother's day out and also take the big kids into her house after they get home from school on those days when Kimberlyn goes to school as well. What I really need is to get out and do some running and exercise, as I find that physical activity is the best way for me to get rid of all of my stress that is built up inside. I am confident that if I can get to the gym a few times per week, I'll be able to handle all of this extra stress right now!

But, I'll tell you that everything that happened this weekend so far has really pumped me up, and I'm so excited that the kids got to see Tommy!

Thats it for now...

17 Jan PM

Quick Update
Nothing much new to post today. Tricia verified that it was indeed Cystic Fibrosis that Tommy's showed a "potential positive" for--but the Dr. is still relatively certain that this is false because he does not have any other complications.

He went up to 15ml's per feeding and he gained about 6 grams. The accuracy of the weight (down to the gram) is pretty questionable as they have him in a diaper and still hooked up to all the machinery when they weight him. So, when they try to lift the wires and tubes so that they don't count in his weight, I don't think they can get a truly accurate measurement, but as long as he is not going backwards, I'm happy!

I forgot to mention that Tricia had an OB appointment yesterday as well. Her blood pressure was actually on the low side (something like 108/55), so they took her off of one of the two blood pressure meds she has been on. Her left eye is still giving her fits, but she has an optometery appt in a couple of weeks. I think her prescription probably changed through all of this--and I understand that to be a common occurence--so hopefully, a new set of contacts for that eye will fix her up!

That is about it for now. We are very thankful for all of you prayers and support!

16 Jan PM

Tommy
Just a quick update. Tommy's ultrasound came back still at a Grade 3 level, but with some improvement. The Dr. is not worried at all about it and expects that there will be no long-term consequences from the blood on his brain.

I also think I made an error with the Cerebral Palsy part in the last entry--Tricia thought I told her that the test came back positive for Cystic Fibrosis. She will double-check with the Dr. tomorrow, but when I did some research, what the Dr. told me matches up exactly with the information I found on Cystic Fibrosis. In fact, there are no blood-type tests that can lead to a diagnosis of Cerebral Palsy, although I did learn that premature infants have a significantly higher rate of that disease. So, I must have gotten them confused. Lets just hope he doesn't have either one!

Tommy is up to 2 pounds, 14 ounces (1302 grams) and his feedings have been increased to 14 ml's per 3 hours! He is still doing very well!

I need to go to bed! It was a crazy day at work, and I am beat! So, have a great day/night!

15 Jan 07

Tricia's Trip
Like I said before, Tricia made it up safe and sound to OKC on Friday, but I didn't quite realize how much ice had accumulated on the car until I got there on Sunday...all I can say is that I'm not exactly sure how she could even steer! There was ice touching the front and back tires in the wheel wells. I chiped it all out and told her not to drive like that anymore!! There is not a ton of tread left on the tires in the first place, and after the rubbing they took, I am hoping they last until I can get some new ones ordered and put on the car!! Here is a picture of it!
We headed up to OKC on Sunday afternoon and got back around 4:30 pm (1630L) on Monday. Brett and Brenda Prothe looked after our animals while we were gone--THANKS! We had a very nice visit-although Glenda offered up her home for our entire family, we wanted to stay in a hotel with an indoor pool--for the kids to have a little fun. We also headed to the mall while we were there, and had some fun playing in the icy parking lot! The roads on the way up were pretty nasty--especially in OKC. But the Jeep loves the snow and did just great (OK, I'll admit it, I actually love driving the Jeep in the snow!) We had fun, but I don't think Tricia thought my crazy driving was much fun when she and I took a trip to the hospital together while Glenda graciously watched the kids.


The Kids and I


Tommy
Tommy continues to do very well...he is up to 13.5 ml's per feeding which equates to about 108 mls (3.6 ounces) per day!!! He now weighs about 2 pounds, 13 ounces and when he gets to 1500 grams (about 3 pounds, 4 ounces) he will start easing into bottle feeding!! Yipee! And in about 3 days, he will be completely off is IV!!! He is still having a few episodes of low breathing rates or low oxygen saturation during the day, but only 3-5 of them, so that isn't too terrible. The oxygen being delivered into his nose has been pretty steady at 30%. They did another brain ultrasound today, and we should find the results tomorrow some time. I talked to the Dr. this morning and asked him lots of questions about his brain--basically, it is not continuing to bleed...the drains in the brain are very small little channels that go into his spinal chord. Basically, as the blood drains, it fills these "ventrical" drains. So, right now, they are pretty full and tend to put pressure on the brain. As the drains expand, the observed "grade" of his condition increases until a point is reached where his body's absorbtion of the blood and the amount of blood that reaches the drains get to be the same--in other words, the blood is not draining as fast as it is collecting now, and they are watching it closely to see when that happens. Hopefully, today's ultrasound will show that the two are about equal now. Additionally, as he himself grows, the brain and the drains in the brain will also grow with him--allowing more and more blood to be expelled from the liquid surrounding his brain. So, the prognisis, according to the Dr. is good.
They also did a blood screening of about 50 or so diseases and genetic defects. One did come back as a potential positive--cerebral palsy. The GOOD news is that this is one of the two tests that often indicate false positives in premature babies. AND, the Dr. is almost certain that it is a false positive. With actual Cerebral Palsy, they would expect lung or intestional complications to be present, but none of his systems are showing any problems. Thus, we are doing what the Dr. said--not worrying about this at all. They will do an additional round of tests just before he is released from the NICU to confirm the false positive.

I got to hold Tommy for about an hour this morning--he is still so small, but I really enjoyed spending that much time with him. I went up for three visits total. I decided this week that my original plan of going to OKC every two weeks was not going to meet my needs of seeing him! The kids (Kaitlyn especially) REALLY want to see him, and it is so hard for them to have to wait. Kailtyn asked me if she would be allowed to hold him when he got home! I said "OF COURSE!!"


I also brought back a bunch of pictures. Kaitlyn gave him one of her tiny little stuffed animals--a dalmation dog. You can see that it looks pretty huge compared to him right now! The nurses said that was a great thing--so we can keep the dog to show him later in life about just how small he was!!

So, the bottom line is that Tommy is doing just great! Praise God for that!





In this last one, Tommy is wearing his very own hat--given to us by Tricia's mom!!!
Pretty soon, he'll get to wear some of the clothes we have for him.

14 Jan AM

Quick Update
Just wanted to let everyone know that things are still fine and dandy! Tommy is up to 12 ml / feeding and last time I heard, he weighed 1240 grams which is just over 2 pounds, 11 ounces. However, that was a about 48 hours ago.

Tricia is hanging in there. I am anxious to see Tommy, and it sounds like from the newstations in OKC that the sleet will stop coming down in a few hours, so I'm going to take the kids up to OKC with me just after lunch. The Jeep does just great in this snow and ice, but you still have to be pretty carefull when stopping. Growing up in Nebraska, I have lots of experience driving in really deep snow, so I'm not terribly worried.

I don't have enough room in the Jeep to haul the laptop, so there won't be any posts until tomorrow night. I just can't wait to see my little guy. Plus, we are going to get a hotel with an indoor pool so the kids can have some fun to make up for not being allowed into the NICU.

12 Jan 07

Tricia
Well, no sleet, ice, snow or wind can keep a mother away from her NICU baby! Tricia made it safely to OKC despite traveling through some harsh conditions today. She got to see our precious boy and then traveled again (safely) back to Glenda's house. I was pretty nervous about her driving, so I sent her with a couple of blankets, my heaviest winter coat, gloves, food and a full tank of gas. I figured that if she ended up in a ditch somewhere, at least she'd be able to be comfortable until someone came to help. But, alas, my worries were once again worthless as she made it just safe and sound-by the Grace of God. Although, I wasn't willing to risk the weather with the other kids, so we stayed home! I think we will give it a shot on Sunday afternoon. There is supposed to be another even bigger wave of freezing rain and snow tomorrow, but I figure that after church, the roads should be reasonably clear, and we could stay the night and come back Monday.

Tommy
Tricia said Tommy was all snuggled up and cozy tonight. He is up to 11 ml's per feeding giving him 88 ml's per day or 3 ounces of food per day!!! I'd still like to see him at least get 110 ml's per day as I read a study that babies who recieved that much or more breastmilk had a statictically significant increase in their post-hostpital performances (mental abilities, physical abilities) than did kids who recieved less than this while in the NICU.

Anyway, at least he is back at his birthweight and should be rapidly putting on weight. Wouln't it be nice to say that we needed to rapidly put on weight? Just a thought that popped into my head as I am munching on popcorn doused with butter and the "family secret" cheeses! (My dad's own creation!)

Anyway, Thanks, God, for keeping Tommy in your hands and delivering Tricia safely to OKC!

11 Jan PM

Tricia made it home just fine, but we are both exhausted from our busy weeks! But, as promised, here are some new pictures of baby Tommy!







He weighted 2 pounds, 11.3 ounces tonight and was 15.55" long! He will have another ultrasound on his brain on Monday.

We are not sure if the kids and I are going to head up to OKC or not due to the weather. I sure do want to see my little guy--especially after looking at the pictures Tricia brought home! I miss him a lot more than I thought I would.

Don't be alarmed if you don't see a post for tomorrow--if we do go up to the city, it will be a long day!!

10 Jan Update

Tommy
The new IV in Tommy's arm seems to be working out pretty well. Hopefully, this means no more IV sticks in the future!! He is also going up to 10 cc's of milk tonight, so that means his overall intake will be nearly 3 ounces. His weight is still hovering just below his birthweight.

The bad news is that they did another ultrasound Monday on his brain--it seems that the blood is still there, and they have upgraded the "seriousness" of the bleeding from a "Grade 1" level to a "Grade 3" level. I am not sure at this point if they think his brain is still bleeding or what--but Tricia reports the doctor is still not overly concerned at this point due to the fact that he is so active and nearly moblie scootching around in his incubator. We ask that you focus your prayers on his brain and that there be no damage done to it due to the blood and that the blood will go away quickly!! The Dr. told Tricia that we are not "out of the woods" yet, but that he was optimistic that the situation should clear up with no outside intervention.

Tricia's homecomming
Tricia will be comming home tomorrow. It seems like forever since she has left--for me and the kids! I can't wait to see her. I saw on the weather forescast that there is a good possiblility of an ice storm on late Friday night though Saturday. We are going to have to watch that closely to determine whether or not the kids and I will return to OKC on Friday afternoon with the intent of coming home on Saturday. The last thing this family needs is any more issues, and me getting stuck in a ditch somewhere with the kids--or worse--does not sound like a great time of fun to me!! If we do go, we'll probably take the Jeep as the Mustang just doesn't like slippery conditions very well.

Take care, and thanks for all the love!

9 Jan PM

Tommy Update
Tommy did something amazing today...he was laying on his tummy with his face toward Tricia, and he lifted his little head up and turned his head so it faced the other way! Tricia was amazed! The nurses told her that did not surprise them at all. They use a padded flexible cushion that wraps around his sides and feet and kind of squishes him to keep him all tucked in and comfortable. They said that a couple of nights ago, he managed to get himself on top of the cushion and had his arms and legs dangling over either side! I told Tricia that it was no big deal that he lifted his head up--after all, it can only weigh a few ounces at most! Hee Hee.

Because of his many movements, IVs have not lasted very long. In the last two days, he has had IVs in three different spots, and when the IV tonight quit working as well, they decided it would be better for Tommy to get a more permanent IV that goes directly into an artery. Tricia had to sign a consent form for the procedure to take place, and they reported that they got it in on the first try and that it was working great. I'm still not sure where exactly it went in, but the research I did said it usually goes into an arm or leg. The IV is called a PICC line--that stands for something, but I forget exactly what. It can last up to a month because it extends farther into a large artery. That is good news for Tommy who already has to suffer from daily heel sticks to test his blood. His poor little heels look more like pin cusions with all the little sores on them! :-(

Tommy is still feeding well, and he is now just about 25 grams from his birth weight...that equates to about 2 pounds, 10.2 ounces right now. Wonderful news, huh? As they increase his feedings, they expect that he will rapidly gain weight.

One more Update

I just talked to Tricia--they had to move Tommy's IV again!!! Now it is back in his foot. But, they say that he is getting very close to the weight where they start letting him regulate his own temperature!! That is one of the criterion for him to come home! Then, once he gets to be 4 pounds, he'll be taken out of the incubator. Those little glimpses of hope are sure nice to see! They are also bumping his feedings to 8.5 ml tonight at his 11:30 pm feeding.

Also, while you are praying for Tommy, Karina Sones is another little girl worthy of prayer. Many of you know her, but in case you don't, you can visit her journal here

Basically, she had lukemia, and they did a bone marrow transplant on her (I think she is about 7 years old). The bone marrow took well, but now she is fighting some other infections that bubbled up in the last few weeks. They were stationed her in Altus and then moved to Washington DC. They are a very sweet Christian family, and we were blessed to know them while they were here.

Just a couple more days until more pictures!!

8 Jan PM

Tommy is still progressing well. He is up to 7.5 ml/feeding. They had to move his IV, and I guess Tricia had to wait for an hour while they did that--they had lots of troubles getting one to work, and I would guess that was pretty tough on our little guy. The IV is back in his head again, and that is so emotionally tough for Tricia to see. Today was the first time she has been up to see him without me being there, so it was a pretty tough day for Tricia. The good news is that they are decreasing the amount of IV nutrients that Tommy gets which means that in a few weeks, he won't have a need for the IV any more--as long as he keeps digesting the breastmilk well.

I went back to work today...only for about 6 hours or so. It was nice to get back into the swing of things. All three kids had school today (Kimberlyn, our youngest, goes to Mother's day out). I was pretty worried that they would have troubles getting going, but they all did just great! I am letting Robby stay up late tonight to watch the game--probably a bad idea, but he and my mom just love football, and I figured it would be a nice treat for both of them (and me) to enjoy watching the game together. As you know, being in the military makes it so the kids don't get to spend as much time with extended family as most other kids, so I think the benefits outweigh the costs in this case.

We had a wonderful dinner of sheppard's pie delivered to us...very yummy. We have delivered meals to people before, and you just don't ever realize what a huge help and blessing those meals are until you are on the recieving end! Thanks!

That's it for tonight. Thanks for your continued prayer support---God definately has His loving hand in our lives!

7 Jan PM

Tommy
Tommy is up to 7 cc's of fluid every 3 hours--which is about 1/4 of an ounce each feeding. So that makes a grand total of about 2 ounces per day of food. They are steadily increasing that, so hopefully, he'll be gaining some more weight soon! He is up to 2 pounds, 8 ounces.

Tricia left back to OKC after church today. It was a tough time at the Nance household, so I took the kids to the park and then we had Pizza hut for dinner. Just a little treat to help us all feel better. Kaitlyn was in bad shape--she was crying her head off as Tricia left, and of course, that was really hard on Tricia too. But, Tricia made it up there and saw Tommy (got to hold him for about 30 minutes too). And now she is settled down at Glenda's house.

Oh by the way, Glenda said her arm was feeling much better. She said that she had been taking some medication from the Doctor, but was not sure if that was the cure or what...I think God is blessing her through our prayers and through her sweet heart--opening her house to Tricia. Thanks to God for Glenda!!

I'll be out of pictures for a while as Tricia has the camera with her, but when she gets back, I'll make sure we get some updated ones!

6 Jan PM

Tricia Drives
Tricia drove today!! I had a notepad and pen and documented several driving infractions on our 2 mile journey from the hotel to the hospital...including rolling through a stop sign--just to be a stinker! She did great and feels safe to drive now. We are home at Altus now after two visits to Tommy this morning. She is planning on returning to OKC Sunday afternoon, and I'll stay here. My mom is planning on sticking around a couple more days before she heads back to Omaha.

Tommy
Tommy is still doing well. He is now on 25% oxygen through his nose--just to help him a bit more as he had a couple of incidents where he shallowed his breathing and his heart rate dropped. They don't seem to be worried about that at all, and they are just working on making sure he doesn't regress. After they checked his blood, they do not anticipate that he'll need to be on the ventilator again, so that is a blessing. There are lots of complications that come from the ventilator including wild blood pressure fluctuations and issues with blood vessles in the eyes, so keeping him off that nasty thing is their priority. Other than that, he continues to slowly gain weight and is now up to 6 cc's of formula every 3 hours. He has digested the last two days of feedings very well with either no remaining milk or about .5 cc's remaining, so that is just awesome.

The Altus Kids
I showed the kids some videos and pictures of Tommy when we got home. They had lots of questions, but mostly, they want to know when they can hold him--especially Kaitlyn. I really wish we could take kids into the NICU, but I know that they are little germ factories, so the potential danger to Tommy is just too great. They'll have plenty of time to love on him once he gets home!

I hope all is well with all of you, and thanks again for all the sweet emails, calls and support you have given us. We truly appreciate it!

5 Jan PM

Sense of Humor
Well, I think we saw the first glimpses of Tommy's humorous side--well, I really doubt he meant to do it, but it was still funny. The nurses weigh Tommy each night, and tonight was no different. Except for the fact that Mommy and Daddy were there to help, so he decided to put on a little show for us. First, the nurse disconnects his electrical leads to help get him out of the isolette. Then, she started changing his diaper. The original plan was to take his diaper off in the isolette and then lay him on top of the clean diaper which was already in the scale. As she put him in the scale, he started pooping all over the place! But, she had her hands full of him and the leads, so I helped hold him as he continued to poop right on the blankets in the scale. While I was holding him, the nurse got a new diaper ready, and while she was trying to put it on him while I was holding him, he decided to begin peeing! So, now I had pee all over my hands while trying hard to steer clear of his butt as it was pretty messy. What a crazy little boy! We finally moved him to a dry spot on the scale and got his diaper on before we weighed him! Whew! Then, I cleaned off my hands and the rest of the visit went smoothly.

If I remember correctly, he weighed in at 1128 grams which is about 2 pounds, 7 ounces--just 4 ounces from his birth weight.

With the nasal tubes delivering air to him, he had only a couple of episodes of lower breathing rates and lower heart rates--so it looks like that did the trick.

Glenda Booker
We also had a nice visit with Glenda Booker (Brent Booker's mom) who offered up her house to Tricia while Tommy is in OKC--what an incredible blessing she is! While you all are keeping us and Tommy in your prayers, say an extra prayer for Glenda for us...she told us her arm has been hurting her the last few days and said the doctor thinks she may have a torn rotator cuff. We pray that God heals her arm and totally eliminates her pain. She is such a sweet-spirited woman, and we are so grateful to have met her!

Tricia and I will be home tomorrow afternoon. I look forward to heading back to church Sunday morning!!

Friday, 5 Jan AM

Peeking out at Daddy

Tommy
Tommy is still hanging in there. He had a bunch (10-15) episodes of "low sats" (low oxygen saturation in his blood) last night. They only last from 5-30 seconds and then things are back to normal. It sets off alarms, and the nurses come and rub his back or move him around a little, and that takes care of the problem. They say that his brain is just immature and forgets to fully breath sometimes. So, they put the tubing that extends just a little way into his nostrils back in--it is not delivering any oxygen, but instead, it just gives a little positive pressure to his lungs to help remind him to breath.
Brain Ultrasound
Tommy's ultrasound came back about the same as last weeks. It was not any worse, so that is good, but it is not much better either. The Dr. reminded us that things like this generally don't change over night. They may take weeks or months. Having this low level of bleeding, he thought, should not raise his risk of mental retardation or any other problems over his already increased risk by being premature.
Tricia and I
Tricia is doing well physically. We both find that this whole experience has been emotionally overwhelming. I am tired, but I get plenty of sleep--even a nap after lunch. Tricia is the same way. While I don't find myself worrying very much, you can't help to think about the end results of all of this and what we can do now to help...the kangaroo care is really important for both Tommy and us, and us being here is also good for Tommy. I have decided that Tricia won't be able to be the sole provider for Tommy during the rest of his stay at the NICU--she is going to need a few days away from this every couple of weeks...like Tricia said, the NICU is just emotionally draining...it is kind of like Disney World--it is wonderful to be there and we love to see Tommy, but after you walk out the doors, you feel the weight of what you just experienced. It is a daunting task for a parent to see his little baby boy frail and helpless with tubes all over--I have great hope for the future, and I am thankful for God's love and everyone's support, but it is still very tough to see him that way.

I found an article a preemie mom wrote in a magazine I was reading--I think she summed up Tricia and my feelings really well. This is hard for me to read without becoming emotional...she wrote:

While I was busy planning a picture perfect future for our family, life took an unexpected turn. We never planned on having a preemie. We also never planned on depending on such wonderful neighbors...We never planned on becoming so close to to othher parents in the NICU sometimes not even knowing their names. And finally, we never planned so many prayers would be said for [our family] during the most difficult time of our lives. Ben's birth at 24 weeks cahnged our lives. We have learned to love unconditionally. As parents of a preemie, we don't worry about a 5 or 10-year plan for him. We celebrate life each and every day just by looking into his precious little face.

Like I told Tricia--no matter how this whole thing turns out. No matter whether Tommy is mentally challenged or worse, God has blessed us with a precious little boy created in His own image, and the more time we get to spend with him, the more we are blessed.

4 Jan PM

Just a quick note--The X-ray of Tommy's stomach and intestines did not show any infection, and he tolerated is last feeding just fine. He is now on meds that will help him to continue to tolerate increased feeding amounts, and it sounds like he will be on that medication until he leaves the NICU or at least for quite some time.

Tricia and I took a nice long walk in the hospital tonight--partly to get out of the hotel for a while. It was good for both of us! We also are planning on heading over to Brent Booker's Mom's house tomorrow afternoon so Tricia can meet her. I can't tell you what a blessing she is. She is just such a nice person, and the fact that she is willing to open her house up to someone for such a long period of time tells you volumes about her. We are so blessed.

4 Jan Afternoon

Tommy just chillin' out in his home! It was cute how his little legs were hanging out of his bed. He was sound asleep, and almost slept though the entire diaper change!

Daddy finally got to hold the little guy--what an experience!

Tommy's Stomach
I am learning all kinds of interesting things. After Tommy "eats" all of his food, they wait for about an hour and then suck whatever remains in his stomach back out to measure it. They like it to be just a little bit--I think it was 10% or less of the full amount of food they look for. That is pretty gross, don't you think?? Anyway, he has been doing very well until this last feeding--almost the whole 5 cc's came back out after the feeding..yummy. They don't seem too concerned just yet--they say that this happens quite often, and I have confirmed that from what I have read online. The main concern is that his bowels have become infected, so they are testing for that right now. The Dr. really does not think that is the case, but he wants to completely rule that out. Then, they give him some meds to help kick-start is digestive track again, and then they will continue to feed him. He has gained another 20 grams or so, and is now just 100 grams from his birthweight. It seems crazy that we are weighing our new baby using grams, doesn't it??
Tommy is also completely off of oxygen in any form--no more nose tubes--the only thing physically stuck in him is a feeding tube and an IV. As things get peeled off his little head, you can see more and more of his face--he is looking a bit more like a little baby boy. Except, he still has about 8 or 9 sensors sticking to him with their associated wires and the like, so moving him from the bed to the chair where we get to hold him is a pretty involved process. I got to hold him for the first time today--Tricia has done it in the past. He is so tiny and light, you almost forget he is on your chest. But, he just sleeps away so comfortably there. I am so impressed with our nurses. They call us and tell us of any changes as they happen--even inbetween visits. And they have such a passion for what they do. I couldn't ask for anything more!

The Altus Kids
I figured out how to play UNO and Tic-Tac-Toe online today, and Robby and Kaitlyn and I all had fun playing for an hour or so. They seem to be doing well, and my mom is enjoying the extra time she has gotten to spend with the kids--especially with our pending move to Germany in about 6 months.

Saturday
We are still planning on comming back to Altus Saturday evening. Hopefully, Tricia will be up to driving herself back to OKC on Sunday, and then we'll start working on a schedule for me to head back to work. I am going to really miss going up to see Tommy every day, but it is a necessary evil. I should still be able to see him on the weekends for a little while. I'm also looking forward to getting back to Church--to see friends and get recharged!!

Take care, and God Bless!

Jan 3 PM Update

Tommy "The Pistol" Nance
Tommy is starting to get a reputation in the NICU--as a feisty little man. This morning, he pulled his IV cord from his bellybutton. He also pulled his feeding tube from his nose a couple of times. They ended up having to put a new IV into his HEAD! That was a scary thing to see for the first time. But, it is better there than it would be in his hand or somewhere else..he would definitely pull it out there. Other than that, he seems to be doing well! He has had a couple of sessions where the oxygen level in his blood went too far down for about 30 seconds--it happens at about the same time each day, so they suspect that they may increase his caffeine intake a bit. I guess the caffeine helps keep him breathing and so forth. He also gained 2 ounces from when we left, so it looks like the breatmilk is doing its thing!

Tricia
I think the visit home greatly helped Tricia. Her doctor's visit went very well--she had her staples removed and some blood work done. Her swelling has greatly decreased and her vision has improved. She still has not taken any pain pills and has much less pain--she is walking much better and much more. So, overall, the is almost all over the hard part (physically at least). She is almost back to my normal wife, and that is just awesome for everyone!

The Altus Kids
All the kids are doing great--Grandma has been doing a great job, and they all seem like they are doing well. We did another webcam session when we got back here to OKC. They really like that.

Well, that is about all the news for now. We found out that tricare (our insurance through the military) will pay for all our hotel costs for the first 10 days--which is pretty much all of the expenses so far! That is great!!

1 Jan PM

I have to include the token C-5 photo!!!

Tommy's New Quarters
Tommy is continuing to make great progress. He is living it up in his new quarters. The isolette is completely enclosed with two openings on either side. It has a blanket that covers the outside so he can sleep in almost total darkness. I think it also keeps it quieter inside for him. There are lots of noisy alarms and stuff that go off from time to time when his or other babies' vital signs go outside of specified parameters. I really like it, but now I can't lean over him and talk to him as easily. You kind of have to talk through one of the openings to make sure he can hear you. But, you can still touch and love on him just the same. We visited at 8am, 12pm and 8pm today. Tricia slept during the 12pm visit--he was crying when I got there for that visit, but right when I put my hand in there and gave him some love, he quieted right down and went back to sleep. There is no doubt that he knows our touch and voices, and that is such a neat thing. You feel so helpless as a parent during these times because you totally have to rely on the nurses to do everything, but the little things you do like getting him to calm down, or changing his diaper make it feel like you are at least doing something helpful for him. Tommy is getting 1/2 of a teaspoon of breastmilk over a 2 hour period. They put the milk into a syringe which is connected to the feeding tube that is in his nose. Then, a machine slowly pushes the plunger on the syringe over the two our period--pretty neat!

The doctors are going to re-do his ultrasound on his brain on Thursday. We pray that the blood is gone or is at least not worse. I can't believe that it can be too bad they way he has been progressing so well.

Tricia
Tricia is hanging in there. She continues to make big improvements. She hasn't taken any pain meds since about 1am this morning, so that tells you a lot. She hates taking meds!! Her vision is still messed up, so that is worrying her a bit. She has been getting headaches off and on, and that has worried her that her blood pressure is on the rise, but we think that the headaches are most likely a result of her eyes straining and not her blood pressure. We'll see how her pressure is tomorrow at her Dr. appt. She is still using a wheelchair to get in and out of the hospital, but she is walking in the hotel room and down to the lobby, so that is good.

The Altus Kids
Robby has responded well to the antibiotics--he seems like he is back to normal, so that is a blessing for us and especially my mom. We have a webcam at home, and I figured out how to get our new video camera we got for Christmas to double as a webcam, so we got to see the kids tonight. That was just great. Isn't technology wonderful?? It kind of reminds me of how I felt when I was deployed--we treasure the ability to talk on the phone and see the kids over the computer. And now they are seeing the pictures on this website too, so they like that. When Tommy gets moved over to the other side of the NICU, there are some windows over there. I might be able to talk the nurses into letting the kids peer though those windows to see him. Kaitlyn especially wants to see her baby brother!!

Thats it for now. We'll be visiting Tommy again in the morning and then will be home to Altus a little after lunchtime tomorrow.

Here are some pictures we took tonight...enjoy, and thanks for all the prayers and support!


This is Tommy's new home. He seems to like it a lot better. Nice and quiet!! I think we might tape up some pictures of the family on the side when we get back.

Here is the inside of Tommy's home. Notice Daddy's wedding ring on his hand. I couldn't quite get it over his nuckles, but I think I could have if I pushed a bit harder. He hates his feeding tube and oxygen going into his nose--he even pulled his tube part-way out tonight while we were there--such a little stinker! His very stylish shades are to block his eyes from the billyruben light...we take them off and turn the light off when we visit. He likes to peek at mommy and daddy when we are there. He is such a cute little guy! I think we'll keep him! You can also see the line going into his bellybutton. They take glood from there and put meds into him as required. I think that will be comming out this week sometime, as they can't use it forever. They also stick his feet and get blood out that way too. I read that a 2 pound baby has about 3 ounces of blood--they said that amount is about the same as one adult-sized gulp of water!! Yikes!

Happy New Year

Ringing in the New Year
My dad and I rang in the new year in the only place I thought was appropriate--at Tommy's side! He is doing so well! We give thanks to God for keeping him in His arms and taking care of him.

New Year's Morning
Tricia had a great night's sleep and felt pretty good this morning. Her feet are slightly less swolen and as of about 1030, she has not had any pain meds for around 6 hours!
But better yet, she got to hold Tommy for an hour this morning. What a precious time. Tommy just snuggled right in on Tricia's chest and slept so soundly. There can be no doubt that he was glad to finally get to snuggle his mommy!

Here are some pictures we took this morning.

Our precious sleeping boy

One happy baby and momma

Tommy lovin momma's warmth

Sleepy pair

My Dad
My Dad headed back to Omaha this morning. We had a nice visit with him, and I'm glad he was able to come down and meet Tommy!


Tuesday Plans
Tricia has a follow-up appointment in Lawton, so we are planning on heading to Altus and spending Tuesday night. Then, we will head back to OKC on Wednesday morning sometime. So, if you guys would like to come visit Tricia for a little while, come on by!

GO HUSKERS
As always, GO HUSKERS, BEAT AUBURN!! Hopefully, things will turn out better than the Big 12 Championship!

God bless, and thanks for everything you have done!

Larry