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

Sunday Afternoon

The good---Goodbye Ventilator!
Tommy is now ventilator free!!! We got to hear him cry for the first time--what a great day!

He now has one of those oxygen tube things that stick just a little way in his nose. They had it pumping just a little supplemental oxygen into him, but he is breathing totally on his own. The plan is to start feeding him tomorrow.

He had a big day so far, so we have kind of decided to leave him alone as much as possible. We'll start skin-to-skin kangaroo care tomorrow and can harldy wait.

Tricia update
Tricia is hurting pretty badly today, but she is still able to get around pretty well. She has also developed a slight headache, so we went down to the ER and had her blood pressure measured just in case. It was fine, so that was reasuring.

The Bad
Robby (our 8 year old) had a fever yesterday, and he woke up with a rash this morning. So, Rachel Jenness took him to the ER for my mom today--the Dr's think its STREP THROAT! Can you believe it? So, he is on antibiotics and sounds like he is doing reasonably well. Hopefully, none of the other kids get it--or my mom either! What a crazy life we are living!